THE 2002 OFFICIAL PATIENT’S SOURCEBOOK
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J AMES N. P ARKER , M.D. AND P HILIP M. P ARKER , P H .D., E DITORS
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ICON Health Publications ICON Group International, Inc. 4370 La Jolla Village Drive, 4th Floor San Diego, CA 92122 USA Copyright Ó2002 by ICON Group International, Inc. Copyright Ó2002 by ICON Group International, Inc. All rights reserved. This book is protected by copyright. No part of it may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without written permission from the publisher. Printed in the United States of America. Last digit indicates print number: 10 9 8 7 6 4 5 3 2 1
Publisher, Health Care: Tiffany LaRochelle Editor(s): James Parker, M.D., Philip Parker, Ph.D. Publisher's note: The ideas, procedures, and suggestions contained in this book are not intended as a substitute for consultation with your physician. All matters regarding your health require medical supervision. As new medical or scientific information becomes available from academic and clinical research, recommended treatments and drug therapies may undergo changes. The authors, editors, and publisher have attempted to make the information in this book up to date and accurate in accord with accepted standards at the time of publication. The authors, editors, and publisher are not responsible for errors or omissions or for consequences from application of the book, and make no warranty, expressed or implied, in regard to the contents of this book. Any practice described in this book should be applied by the reader in accordance with professional standards of care used in regard to the unique circumstances that may apply in each situation, in close consultation with a qualified physician. The reader is advised to always check product information (package inserts) for changes and new information regarding dose and contraindications before taking any drug or pharmacological product. Caution is especially urged when using new or infrequently ordered drugs, herbal remedies, vitamins and supplements, alternative therapies, complementary therapies and medicines, and integrative medical treatments. Cataloging-in-Publication Data Parker, James N., 1961Parker, Philip M., 1960The 2002 Official Patient’s Sourcebook on Psoriasis: A Revised and Updated Directory for the Internet Age/James N. Parker and Philip M. Parker, editors p. cm. Includes bibliographical references, glossary and index. ISBN: 0-597-83405-9 1. Psoriasis-Popular works. I. Title.
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Disclaimer This publication is not intended to be used for the diagnosis or treatment of a health problem or as a substitute for consultation with licensed medical professionals. It is sold with the understanding that the publisher, editors, and authors are not engaging in the rendering of medical, psychological, financial, legal, or other professional services. References to any entity, product, service, or source of information that may be contained in this publication should not be considered an endorsement, either direct or implied, by the publisher, editors or authors. ICON Group International, Inc., the editors, or the authors are not responsible for the content of any Web pages nor publications referenced in this publication.
Copyright Notice If a physician wishes to copy limited passages from this sourcebook for patient use, this right is automatically granted without written permission from ICON Group International, Inc. (ICON Group). However, all of ICON Group publications are copyrighted. With exception to the above, copying our publications in whole or in part, for whatever reason, is a violation of copyright laws and can lead to penalties and fines. Should you want to copy tables, graphs or other materials, please contact us to request permission (e-mail:
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Dedication To the healthcare professionals dedicating their time and efforts to the study of psoriasis.
Acknowledgements The collective knowledge generated from academic and applied research summarized in various references has been critical in the creation of this sourcebook which is best viewed as a comprehensive compilation and collection of information prepared by various official agencies which directly or indirectly are dedicated to psoriasis. All of the Official Patient’s Sourcebooks draw from various agencies and institutions associated with the United States Department of Health and Human Services, and in particular, the Office of the Secretary of Health and Human Services (OS), the Administration for Children and Families (ACF), the Administration on Aging (AOA), the Agency for Healthcare Research and Quality (AHRQ), the Agency for Toxic Substances and Disease Registry (ATSDR), the Centers for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA), the Healthcare Financing Administration (HCFA), the Health Resources and Services Administration (HRSA), the Indian Health Service (IHS), the institutions of the National Institutes of Health (NIH), the Program Support Center (PSC), and the Substance Abuse and Mental Health Services Administration (SAMHSA). In addition to these sources, information gathered from the National Library of Medicine, the United States Patent Office, the European Union, and their related organizations has been invaluable in the creation of this sourcebook. Some of the work represented was financially supported by the Research and Development Committee at INSEAD. This support is gratefully acknowledged. Finally, special thanks are owed to Tiffany LaRochelle for her excellent editorial support.
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About the Editors James N. Parker, M.D. Dr. James N. Parker received his Bachelor of Science degree in Psychobiology from the University of California, Riverside and his M.D. from the University of California, San Diego. In addition to authoring numerous research publications, he has lectured at various academic institutions. Dr. Parker is the medical editor for the Official Patient’s Sourcebook series published by ICON Health Publications.
Philip M. Parker, Ph.D. Philip M. Parker is the Eli Lilly Chair Professor of Innovation, Business and Society at INSEAD (Fontainebleau, France and Singapore). Dr. Parker has also been Professor at the University of California, San Diego and has taught courses at Harvard University, the Hong Kong University of Science and Technology, the Massachusetts Institute of Technology, Stanford University, and UCLA. Dr. Parker is the associate editor for the Official Patient’s Sourcebook series published by ICON Health Publications.
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About ICON Health Publications In addition to psoriasis, Official Patient’s Sourcebooks are available for the following related topics: ·
The Official Patient's Sourcebook on Acne
·
The Official Patient's Sourcebook on Acne Rosacea
·
The Official Patient's Sourcebook on Atopic Dermatitis
·
The Official Patient's Sourcebook on Behçet Syndrome
·
The Official Patient's Sourcebook on Epidermolysis Bullosa
·
The Official Patient's Sourcebook on Lichen Sclerosus
·
The Official Patient's Sourcebook on Lyme Disease
·
The Official Patient's Sourcebook on Raynaud's Phenomenon
·
The Official Patient's Sourcebook on Scleroderma
·
The Official Patient's Sourcebook on Sjogren's Syndrome
·
The Official Patient's Sourcebook on Vitiligo
To discover more about ICON Health Publications, simply check with your preferred online booksellers, including Barnes & Noble.com and Amazon.com which currently carry all of our titles. Or, feel free to contact us directly for bulk purchases or institutional discounts: ICON Group International, Inc. 4370 La Jolla Village Drive, Fourth Floor San Diego, CA 92122 USA Fax: 858-546-4341 Web site: www.icongrouponline.com/health
Contents vii
Table of Contents INTRODUCTION...................................................................................... 1
Overview............................................................................................................... 1 Organization......................................................................................................... 3 Scope ..................................................................................................................... 3 Moving Forward................................................................................................... 4
PART I: THE ESSENTIALS ................................................. 7 CHAPTER 1. THE ESSENTIALS ON PSORIASIS: GUIDELINES .................. 9
Overview............................................................................................................... 9 What Is Psoriasis? .............................................................................................. 10 What Causes Psoriasis?...................................................................................... 11 How Is Psoriasis Diagnosed? ............................................................................. 11 What Treatments Are Available for Psoriasis? .................................................. 12 What Are Some Promising Areas of Psoriasis Research? .................................. 16 How Can People Contribute to Psoriasis Research? .......................................... 17 Where Can I Find More Information about Psoriasis? ...................................... 17 More Guideline Sources ..................................................................................... 18 Vocabulary Builder............................................................................................. 32
CHAPTER 2. SEEKING GUIDANCE ....................................................... 37
Overview............................................................................................................. 37 Associations and Psoriasis.................................................................................. 37 Finding More Associations................................................................................. 42 Finding Doctors.................................................................................................. 44 Finding a Dermatologist..................................................................................... 45 Selecting Your Doctor ........................................................................................ 45 Working with Your Doctor ................................................................................ 46 Broader Health-Related Resources ..................................................................... 47 Vocabulary Builder............................................................................................. 47
CHAPTER 3. CLINICAL TRIALS AND PSORIASIS .................................. 49
Overview............................................................................................................. 49 Recent Trials on Psoriasis .................................................................................. 52 Benefits and Risks............................................................................................... 60 Keeping Current on Clinical Trials.................................................................... 63 General References.............................................................................................. 64 Vocabulary Builder............................................................................................. 65
PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL.................................................. 67 CHAPTER 4. STUDIES ON PSORIASIS .................................................... 69
Overview............................................................................................................. 69 The Combined Health Information Database ..................................................... 69
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Federally-Funded Research on Psoriasis ............................................................ 80 E-Journals: PubMed Central .............................................................................. 93 The National Library of Medicine: PubMed ...................................................... 94 Vocabulary Builder........................................................................................... 103
CHAPTER 5. PATENTS ON PSORIASIS ................................................ 113
Overview........................................................................................................... 113 Patents on Psoriasis.......................................................................................... 114 Patent Applications on Psoriasis...................................................................... 129 Keeping Current ............................................................................................... 137 Vocabulary Builder........................................................................................... 137
CHAPTER 6. BOOKS ON PSORIASIS .................................................... 143
Overview........................................................................................................... 143 Book Summaries: Federal Agencies .................................................................. 143 Book Summaries: Online Booksellers ............................................................... 146 The National Library of Medicine Book Index ................................................. 148 Chapters on Psoriasis........................................................................................ 151 General Home References ................................................................................. 154 Vocabulary Builder........................................................................................... 155
CHAPTER 7. MULTIMEDIA ON PSORIASIS ......................................... 157
Overview........................................................................................................... 157 Video Recordings .............................................................................................. 157 Bibliography: Multimedia on Psoriasis ............................................................ 158 Vocabulary Builder........................................................................................... 160
CHAPTER 8. PERIODICALS AND NEWS ON PSORIASIS ...................... 161
Overview........................................................................................................... 161 News Services & Press Releases ....................................................................... 161 Newsletter Articles ........................................................................................... 171 Academic Periodicals covering Psoriasis.......................................................... 179 Vocabulary Builder........................................................................................... 180
CHAPTER 9. PHYSICIAN GUIDELINES AND DATABASES ................... 183
Overview........................................................................................................... 183 NIH Guidelines................................................................................................. 183 NIH Databases.................................................................................................. 184 Other Commercial Databases ........................................................................... 196 The Genome Project and Psoriasis ................................................................... 197 Specialized References....................................................................................... 202 Vocabulary Builder........................................................................................... 203
CHAPTER 10. DISSERTATIONS ON PSORIASIS .................................... 205
Overview........................................................................................................... 205 Dissertations on Psoriasis ................................................................................ 205 Keeping Current ............................................................................................... 206
PART III. APPENDICES .................................................. 207
Contents
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APPENDIX A. RESEARCHING YOUR MEDICATIONS.......................... 209
Overview........................................................................................................... 209 Your Medications: The Basics .......................................................................... 210 Learning More about Your Medications .......................................................... 211 Commercial Databases...................................................................................... 217 Contraindications and Interactions (Hidden Dangers) ................................... 219 A Final Warning .............................................................................................. 220 General References............................................................................................ 220 Vocabulary Builder........................................................................................... 222
APPENDIX B. RESEARCHING ALTERNATIVE MEDICINE ................... 223
Overview........................................................................................................... 223 What Is CAM? ................................................................................................. 223 What Are the Domains of Alternative Medicine?............................................ 224 Can Alternatives Affect My Treatment? ......................................................... 227 Finding CAM References on Psoriasis............................................................. 228 Additional Web Resources................................................................................ 239 General References............................................................................................ 257 Vocabulary Builder........................................................................................... 258
APPENDIX C. RESEARCHING NUTRITION ......................................... 261
Overview........................................................................................................... 261 Food and Nutrition: General Principles........................................................... 262 Finding Studies on Psoriasis ............................................................................ 266 Federal Resources on Nutrition........................................................................ 270 Additional Web Resources................................................................................ 271 Vocabulary Builder........................................................................................... 276
APPENDIX D. FINDING MEDICAL LIBRARIES.................................... 279
Overview........................................................................................................... 279 Preparation ....................................................................................................... 279 Finding a Local Medical Library ...................................................................... 280 Medical Libraries Open to the Public............................................................... 280
APPENDIX E. YOUR RIGHTS AND INSURANCE ................................. 287
Overview........................................................................................................... 287 Your Rights as a Patient................................................................................... 287 Patient Responsibilities .................................................................................... 291 Choosing an Insurance Plan............................................................................. 292 Medicare and Medicaid .................................................................................... 294 NORD’s Medication Assistance Programs ..................................................... 297 Additional Resources ........................................................................................ 298 Vocabulary Builder........................................................................................... 299
ONLINE GLOSSARIES.................................................... 301 Online Dictionary Directories.......................................................................... 308
PSORIASIS GLOSSARY.................................................. 309
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Contents
General Dictionaries and Glossaries ................................................................ 334
INDEX................................................................................... 336
Introduction
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INTRODUCTION Overview Dr. C. Everett Koop, former U.S. Surgeon General, once said, “The best prescription is knowledge.”1 The Agency for Healthcare Research and Quality (AHRQ) of the National Institutes of Health (NIH) echoes this view and recommends that every patient incorporate education into the treatment process. According to the AHRQ: Finding out more about your condition is a good place to start. By contacting groups that support your condition, visiting your local library, and searching on the Internet, you can find good information to help guide your treatment decisions. Some information may be hard to find—especially if you don't know where to look.2 As the AHRQ mentions, finding the right information is not an obvious task. Though many physicians and public officials had thought that the emergence of the Internet would do much to assist patients in obtaining reliable information, in March 2001 the National Institutes of Health issued the following warning: The number of Web sites offering health-related resources grows every day. Many sites provide valuable information, while others may have information that is unreliable or misleading.3
Quotation from http://www.drkoop.com. The Agency for Healthcare Research and Quality (AHRQ): http://www.ahcpr.gov/consumer/diaginfo.htm. 3 From the NIH, National Cancer Institute (NCI): http://cancertrials.nci.nih.gov/beyond/evaluating.html. 1 2
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Psoriasis
Since the late 1990s, physicians have seen a general increase in patient Internet usage rates. Patients frequently enter their doctor's offices with printed Web pages of home remedies in the guise of latest medical research. This scenario is so common that doctors often spend more time dispelling misleading information than guiding patients through sound therapies. The 2002 Official Patient’s Sourcebook on Psoriasis has been created for patients who have decided to make education and research an integral part of the treatment process. The pages that follow will tell you where and how to look for information covering virtually all topics related to psoriasis, from the essentials to the most advanced areas of research. The title of this book includes the word “official.” This reflects the fact that the sourcebook draws from public, academic, government, and peerreviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on psoriasis. Given patients’ increasing sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-ofcharge, primary research results as well as more detailed information via the Internet. E-book and electronic versions of this sourcebook are fully interactive with each of the Internet sites mentioned (clicking on a hyperlink automatically opens your browser to the site indicated). Hard copy users of this sourcebook can type cited Web addresses directly into their browsers to obtain access to the corresponding sites. Since we are working with ICON Health Publications, hard copy Sourcebooks are frequently updated and printed on demand to ensure that the information provided is current. In addition to extensive references accessible via the Internet, every chapter presents a “Vocabulary Builder.” Many health guides offer glossaries of technical or uncommon terms in an appendix. In editing this sourcebook, we have decided to place a smaller glossary within each chapter that covers terms used in that chapter. Given the technical nature of some chapters, you may need to revisit many sections. Building one’s vocabulary of medical terms in such a gradual manner has been shown to improve the learning process. We must emphasize that no sourcebook on psoriasis should affirm that a specific diagnostic procedure or treatment discussed in a research study, patent, or doctoral dissertation is “correct” or your best option. This sourcebook is no exception. Each patient is unique. Deciding on appropriate
Introduction
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options is always up to the patient in consultation with their physician and healthcare providers.
Organization This sourcebook is organized into three parts. Part I explores basic techniques to researching psoriasis (e.g. finding guidelines on diagnosis, treatments, and prognosis), followed by a number of topics, including information on how to get in touch with organizations, associations, or other patient networks dedicated to psoriasis. It also gives you sources of information that can help you find a doctor in your local area specializing in treating psoriasis. Collectively, the material presented in Part I is a complete primer on basic research topics for patients with psoriasis. Part II moves on to advanced research dedicated to psoriasis. Part II is intended for those willing to invest many hours of hard work and study. It is here that we direct you to the latest scientific and applied research on psoriasis. When possible, contact names, links via the Internet, and summaries are provided. It is in Part II where the vocabulary process becomes important as authors publishing advanced research frequently use highly specialized language. In general, every attempt is made to recommend “free-to-use” options. Part III provides appendices of useful background reading for all patients with psoriasis or related disorders. The appendices are dedicated to more pragmatic issues faced by many patients with psoriasis. Accessing materials via medical libraries may be the only option for some readers, so a guide is provided for finding local medical libraries which are open to the public. Part III, therefore, focuses on advice that goes beyond the biological and scientific issues facing patients with psoriasis.
Scope While this sourcebook covers psoriasis, your doctor, research publications, and specialists may refer to your condition using a variety of terms. Therefore, you should understand that psoriasis is often considered a synonym or a condition closely related to the following: ·
Arthritic Psoriasis
·
Arthropathic Psoriasis
·
Parapsoriasis
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Psoriasis
·
Plaque Psoriasis
In addition to synonyms and related conditions, physicians may refer to psoriasis using certain coding systems. The International Classification of Diseases, 9th Revision, Clinical Modification (ICD-9-CM) is the most commonly used system of classification for the world's illnesses. Your physician may use this coding system as an administrative or tracking tool. The following classification is commonly used for psoriasis:4 ·
696.0 psoriasis, arthritis, arthropathic
·
696.1 other psoriasis
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696.1 psoriasis, any type except arthropathic
·
696.2 parapsoriasis
For the purposes of this sourcebook, we have attempted to be as inclusive as possible, looking for official information for all of the synonyms relevant to psoriasis. You may find it useful to refer to synonyms when accessing databases or interacting with healthcare professionals and medical librarians.
Moving Forward Since the 1980s, the world has seen a proliferation of healthcare guides covering most illnesses. Some are written by patients or their family members. These generally take a layperson's approach to understanding and coping with an illness or disorder. They can be uplifting, encouraging, and highly supportive. Other guides are authored by physicians or other healthcare providers who have a more clinical outlook. Each of these two styles of guide has its purpose and can be quite useful. As editors, we have chosen a third route. We have chosen to expose you to as many sources of official and peer-reviewed information as practical, for the purpose of educating you about basic and advanced knowledge as recognized by medical science today. You can think of this sourcebook as your personal Internet age reference librarian. Why “Internet age”? All too often, patients diagnosed with psoriasis will log on to the Internet, type words into a search engine, and receive several Web 4 This list is based on the official version of the World Health Organization's 9th Revision, International Classification of Diseases (ICD-9). According to the National Technical Information Service, “ICD-9CM extensions, interpretations, modifications, addenda, or errata other than those approved by the U.S. Public Health Service and the Health Care Financing Administration are not to be considered official and should not be utilized. Continuous maintenance of the ICD-9-CM is the responsibility of the federal government.”
Introduction
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site listings which are mostly irrelevant or redundant. These patients are left to wonder where the relevant information is, and how to obtain it. Since only the smallest fraction of information dealing with psoriasis is even indexed in search engines, a non-systematic approach often leads to frustration and disappointment. With this sourcebook, we hope to direct you to the information you need that you would not likely find using popular Web directories. Beyond Web listings, in many cases we will reproduce brief summaries or abstracts of available reference materials. These abstracts often contain distilled information on topics of discussion. While we focus on the more scientific aspects of psoriasis, there is, of course, the emotional side to consider. Later in the sourcebook, we provide a chapter dedicated to helping you find peer groups and associations that can provide additional support beyond research produced by medical science. We hope that the choices we have made give you the most options available in moving forward. In this way, we wish you the best in your efforts to incorporate this educational approach into your treatment plan. The Editors
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PART I: THE ESSENTIALS
ABOUT PART I Part I has been edited to give you access to what we feel are “the essentials” on psoriasis. The essentials of a disease typically include the definition or description of the disease, a discussion of who it affects, the signs or symptoms associated with the disease, tests or diagnostic procedures that might be specific to the disease, and treatments for the disease. Your doctor or healthcare provider may have already explained the essentials of psoriasis to you or even given you a pamphlet or brochure describing psoriasis. Now you are searching for more in-depth information. As editors, we have decided, nevertheless, to include a discussion on where to find essential information that can complement what your doctor has already told you. In this section we recommend a process, not a particular Web site or reference book. The process ensures that, as you search the Web, you gain background information in such a way as to maximize your understanding.
Guidelines
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CHAPTER 1. THE ESSENTIALS ON PSORIASIS: GUIDELINES Overview Official agencies, as well as federally-funded institutions supported by national grants, frequently publish a variety of guidelines on psoriasis. These are typically called “Fact Sheets” or “Guidelines.” They can take the form of a brochure, information kit, pamphlet, or flyer. Often they are only a few pages in length. The great advantage of guidelines over other sources is that they are often written with the patient in mind. Since new guidelines on psoriasis can appear at any moment and be published by a number of sources, the best approach to finding guidelines is to systematically scan the Internet-based services that post them.
The National Institutes of Health (NIH)5 The National Institutes of Health (NIH) is the first place to search for relatively current patient guidelines and fact sheets on psoriasis. Originally founded in 1887, the NIH is one of the world's foremost medical research centers and the federal focal point for medical research in the United States. At any given time, the NIH supports some 35,000 research grants at universities, medical schools, and other research and training institutions, both nationally and internationally. The rosters of those who have conducted research or who have received NIH support over the years include the world's most illustrious scientists and physicians. Among them are 97 scientists who have won the Nobel Prize for achievement in medicine.
5
Adapted from the NIH: http://www.nih.gov/about/NIHoverview.html.
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There is no guarantee that any one Institute will have a guideline on a specific disease, though the National Institutes of Health collectively publish over 600 guidelines for both common and rare diseases. The best way to access NIH guidelines is via the Internet. Although the NIH is organized into many different Institutes and Offices, the following is a list of key Web sites where you are most likely to find NIH clinical guidelines and publications dealing with psoriasis and associated conditions: ·
Office of the Director (OD); guidelines consolidated across agencies available at http://www.nih.gov/health/consumer/conkey.htm
·
National Library of Medicine (NLM); extensive encyclopedia (A.D.A.M., Inc. ) with guidelines available at http://www.nlm.nih.gov/medlineplus/healthtopics.html
·
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS); fact sheets and guidelines at http://www.nih.gov/niams/healthinfo/
Among those listed above, the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) is especially noteworthy. The mission of NIAMS, a part of the National Institutes of Health (NIH), is to support research into the causes, treatment, and prevention of arthritis and musculoskeletal and skin diseases, the training of basic and clinical scientists to carry out this research, and the dissemination of information on research progress in these diseases. The National Institute of Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse is a public service sponsored by the NIAMS that provides health information and information sources. The NIAMS provides the following guideline concerning psoriasis.6
What Is Psoriasis?7 Psoriasis is a chronic (long-lasting) skin disease characterized by scaling and inflammation. Scaling occurs when cells in the outer layer of the skin reproduce faster than normal and pile up on the skin’s surface. Psoriasis affects between 1 and 2 percent of the United States population, or about 5.5 million people. Although the disease occurs in all age groups and 6This and other passages are adapted from the NIH and NIAMS (http://www.niams.nih.gov/hi/index.htm). “Adapted” signifies that the text is reproduced with attribution, with some or no editorial adjustments. 7 Adapted from the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS): http://www.niams.nih.gov/hi/topics/psoriasis/psoriafs.htm.
Guidelines 11
about equally in men and women, it primarily affects adults. People with psoriasis may suffer discomfort, including pain and itching, restricted motion in their joints, and emotional distress. In its most typical form, psoriasis results in patches of thick, red skin covered with silvery scales. These patches, which are sometimes referred to as plaques, usually itch and may burn. The skin at the joints may crack. Psoriasis most often occurs on the elbows, knees, scalp, lower back, face, palms, and soles of the feet but it can affect any skin site. The disease may also affect the fingernails, the toenails, and the soft tissues inside the mouth and genitalia. About 15 percent of people with psoriasis have joint inflammation that produces arthritis symptoms. This condition is called psoriatic arthritis.
What Causes Psoriasis? Recent research indicates that psoriasis is likely a disorder of the immune system. This system includes a type of white blood cell, called a T cell, that normally helps protect the body against infection and disease. Scientists now think that, in psoriasis, an abnormal immune system causes activity by T cells in the skin. These T cells trigger the inflammation and excessive skin cell reproduction seen in people with psoriasis. In about one-third of the cases, psoriasis is inherited. Researchers are studying large families affected by psoriasis to identify a gene or genes that cause the disease. (Genes govern every bodily function and determine the inherited traits passed from parent to child.) People with psoriasis may notice that there are times when their skin worsens, then improves. Conditions that may cause flareups include changes in climate, infections, stress, and dry skin. Also, certain medicines, most notably beta-blockers, which are used to treat high blood pressure, and lithium or drugs used to treat depression, may trigger an outbreak or worsen the disease.
How Is Psoriasis Diagnosed? Doctors usually diagnose psoriasis after a careful examination of the skin. However, diagnosis may be difficult because psoriasis can look like other skin diseases. A pathologist may assist with diagnosis by examining a small skin sample (biopsy) under a microscope.
12 Psoriasis
There are several forms of psoriasis. The most common form is plaque psoriasis (its scientific name is psoriasis vulgaris). In plaque psoriasis, lesions have a reddened base covered by silvery scales. Other forms of psoriasis include ·
Guttate psoriasis--Small, drop-like lesions appear on the trunk, limbs, and scalp. Guttate psoriasis is most often triggered by bacterial infections (for example, Streptococcus).
·
Pustular psoriasis--Blisters of noninfectious pus appear on the skin. Attacks of pustular psoriasis may be triggered by medications, infections, emotional stress, or exposure to certain chemicals. Pustular psoriasis may affect either small or large areas of the body.
·
Inverse psoriasis--Large, dry, smooth, vividly red plaques occur in the folds of the skin near the genitals, under the breasts, or in the armpits. Inverse psoriasis is related to increased sensitivity to friction and sweating and may be painful or itchy.
·
Erythrodermic psoriasis--Widespread reddening and scaling of the skin is often accompanied by itching or pain. Erythrodermic psoriasis may be precipitated by severe sunburn, use of oral steroids (such as cortisone), or a drug-related rash.
What Treatments Are Available for Psoriasis? Doctors generally treat psoriasis in steps based on the severity of the disease, the extent of the areas involved, the type of psoriasis, or the patient’s responsiveness to initial treatments. This is sometimes called the “1-2-3” approach. In step 1, medicines are applied to the skin (topical treatment). Step 2 focuses on light treatments (phototherapy). Step 3 involves taking medicines internally, usually by mouth (systemic treatment). Over time, affected skin can become resistant to treatment, especially when topical corticosteroids are used. Also, a treatment that works very well in one person may have little effect in another. Thus, doctors commonly use a trial-and-error approach to find a treatment that works, and they may switch treatments periodically (for example, every 12 to 24 months) if resistance or adverse reactions occur. Treatment depends on the location of lesions, their size, the amount of the skin affected, previous response to treatment, and patients’ perceptions about their skin condition and preferences for treatment. In addition, treatment is often tailored to the specific form of the disorder.
Guidelines 13
Topical Treatment Treatments applied directly to the skin are sometimes effective in clearing psoriasis. Doctors find that some patients respond well to sunlight, corticosteroid ointments, medicines derived from vitamin D3, vitamin A (retinoids), coal tar, or anthralin. Other topical measures, such as bath solutions and moisturizers, may be soothing but are seldom strong enough to clear lesions over the long term and may need to be combined with more potent remedies. ·
Sunlight--Daily, regular, short doses of sunlight that do not produce a sunburn clear psoriasis in many people.
·
Corticosteroids--Available in different strengths, corticosteroids (cortisone) are usually applied twice a day. Short-term treatment is often effective in improving but not completely clearing psoriasis. If less than 10 percent of the skin is involved, some doctors will begin treatment with a high-potency corticosteroid ointment (for example, Diprolene®,8 Temovate®, Ultravate®, or Psorcon®). High-potency steroids may also be used for treatment-resistant plaques, particularly those on the hands or feet. Long-term use or overuse of high-potency steroids can lead to worsening of the psoriasis, thinning of the skin, internal side effects, and resistance to the treatment’s benefits. Medium-potency corticosteroids may be used on the torso or limbs; low-potency preparations are used on delicate skin areas.
·
Calcipotriene--This drug is a synthetic form of vitamin D3. (It is not the same as vitamin D supplements.) Applying calcipotriene ointment (for example, Dovonex®) twice a day controls excessive production of skin cells. Because calcipotriene can irritate the skin, however, it is not recommended for the face or genitals. After 4 months of treatment, about 60 percent of patients have a good to excellent response. The safety of using the drug for cases affecting more than 20 percent of the skin is unknown, and using it on widespread areas of the skin may raise the amount of calcium in the body to unhealthy levels.
·
Coal tar--Coal tar may be applied directly to the skin, used in a bath solution, or used on the scalp as a shampoo. It is available in different strengths, but the most potent form may be irritating. It is sometimes combined with ultraviolet B (UVB) phototherapy. Compared with steroids, coal tar has fewer side effects, but it is messy and less effective
Brand names included in this fact sheet begin with a capital letter and are provided as examples only. Their inclusion does not mean that these products are endorsed by the National Institutes of Health or any other Government agency. Also, if a particular brand name is not mentioned, this does not mean or imply that the product is unsatisfactory. 8
14 Psoriasis
and thus is not popular with many patients. Other drawbacks include its failure to provide long-term help for most patients, its strong odor, and its tendency to stain skin or clothing. ·
Anthralin--Doctors sometimes use a 15- to 30-minute application of anthralin ointment, cream, or paste to treat chronic psoriasis lesions. However, this treatment often fails to adequately clear lesions, it may irritate the skin, and it stains skin and clothing brown or purple. In addition, anthralin is unsuitable for acute or actively inflamed eruptions.
·
Topical retinoid--The retinoid tazarotene (Tazorac) is a fast-drying, clear gel that is applied to the surface of the skin. Although this preparation does not act as quickly as topical corticosteroids, it has fewer side effects. Because it is irritating to normal skin, it should be used with caution in skin folds. Women of childbearing age should use birth control when using tazarotene.
·
Salicylic acid--Salicylic acid is used to remove scales, and is most effective when combined with topical steroids, anthralin, or coal tar.
·
Bath solutions--People with psoriasis may find that bathing in water with an oil added, then applying a moisturizer, can soothe their skin. Scales can be removed and itching reduced by soaking for 15 minutes in water containing a tar solution, oiled oatmeal, Epsom salts, or Dead Sea salts.
·
Moisturizers--When applied regularly over a long period, moisturizers have a cosmetic and soothing effect. Preparations that are thick and greasy usually work best because they hold water in the skin, reducing the scales and the itching. Phototherapy
Ultraviolet (UV) light from the sun causes the activated T cells in the skin to die, a process called apoptosis. Apoptosis reduces inflammation and slows the overproduction of skin cells that causes scaling. Daily, short, nonburning exposure to sunlight clears or improves psoriasis in many people. Therefore, sunlight may be included among initial treatments for the disease. A more controlled form of artificial light treatment may be used in mild psoriasis (UVB phototherapy) or in more severe or extensive psoriasis (psoralen and ultraviolet A [PUVA] therapy). ·
UVB phototherapy--Some artificial sources of UVB light are similar to sunlight. Newer sources, called narrow-band UVB, emit the part of the ultraviolet spectrum band that is most helpful for psoriasis. Some physicians will start with UVB treatments instead of topical agents. UVB
Guidelines 15
phototherapy is also used to treat widespread psoriasis and lesions that resist topical treatment. This type of phototherapy is normally administered in a doctor’s office by using a light panel or light box, although some patients can use UVB light boxes at home with a doctor’s guidance. Generally at least three treatments a week for 2 or 3 months are needed. UVB phototherapy may be combined with other treatments as well. One combined therapy program, referred to as the Ingram regime, involves a coal tar bath, UVB phototherapy, and application of an anthralin-salicylic acid paste, which is left on the skin for 6 to 24 hours. A similar regime, the Goeckerman treatment, involves application of coal tar ointment and UVB phototherapy. ·
PUVA--This treatment combines oral or topical administration of a medicine called psoralen with exposure to ultraviolet A (UVA) light. Psoralen makes the body more sensitive to this light. PUVA is normally used when more than 10 percent of the skin is affected or when rapid clearing is required because the disease interferes with a person’s occupation (for example, when a model’s face or a carpenter’s hands are involved). Compared with UVB treatment, PUVA treatment taken two to three times a week clears psoriasis more consistently and in fewer treatments. However, it is associated with more short-term side effects, including nausea, headache, fatigue, burning, and itching. Long-term treatment is associated with an increased risk of squamous cell and melanoma skin cancers. PUVA can be combined with some oral medications (retinoids and hydroxyurea) to increase its effectiveness. Simultaneous use of drugs that suppress the immune system, such as cyclosporine, have little beneficial effect and increase the risk of cancer. In very rare cases, patients who must travel long distances for PUVA treatments may, with a physician’s close supervision, be taught to administer this treatment at home.
Systemic Treatment For more severe forms of psoriasis, doctors sometimes prescribe medicines that are taken internally. The following are types of medications available for the treatment of psoriasis: ·
Methotrexate--This treatment, which can be taken by pill or injection, slows cell production by suppressing the immune system. Patients taking methotrexate must be closely monitored because it can cause liver damage and/or decrease the production of oxygen-carrying red blood cells, infection-fighting white blood cells, and clot-enhancing platelets. As a precaution, doctors do not prescribe the drug for people with long-term
16 Psoriasis
liver disease or anemia. Methotrexate should not be used by pregnant women, by women who are planning to get pregnant, or by their male partners. ·
Cyclosporine--Taken orally, cyclosporine (Neoral®) acts by suppressing the immune system in a way that slows the rapid turnover of skin cells. It may provide quick relief of symptoms, but it is usually effective only during the course of treatment. The best candidates for this therapy are those with severe psoriasis who have not responded to or cannot tolerate other systemic therapies. Cyclosporine may impair kidney function or cause high blood pressure (hypertension), so patients must be carefully monitored by a doctor. Also, cyclosporine is not recommended for patients who have a weak immune system, those who have had substantial exposure to UVB or PUVA in the past, or those who are pregnant or breast-feeding.
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Hydroxyurea (Hydrea®)--Compared with methotrexate and cyclosporine, hydroxyurea is less toxic but also less effective. It is sometimes combined with PUVA or UVB. Possible side effects include anemia and a decrease in white blood cells and platelets. Like methotrexate and cyclosporine, hydroxyurea must be avoided by pregnant women or those who are planning to become pregnant.
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Retinoids--A retinoid, such as acitretin (Soriatane®), is a compound with vitamin A-like properties that may be prescribed for severe cases of psoriasis that do not respond to other therapies. Because this treatment also may cause birth defects, women must protect themselves from pregnancy beginning 1 month before through 3 years after treatment. Most patients experience a recurrence of psoriasis after acitretin is discontinued.
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Antibiotics--Although not indicated in routine treatment, antibiotics may be employed when an infection, such as Streptococcus, triggers the outbreak of psoriasis, as in certain cases of guttate psoriasis.
What Are Some Promising Areas of Psoriasis Research? Researchers continue to search for genes that contribute to the inherited and other causes of psoriasis. Scientists are also working to improve our understanding of what happens in the body to trigger this disease. In addition, much research is focused on developing new and better treatments. Some of these experimental treatments, such as agents directed at the specific types of T cells involved, work to improve the disease with less overall suppression of the immune system.
Guidelines 17
How Can People Contribute to Psoriasis Research? The National Psoriasis Tissue Bank, which is supported by the National Psoriasis Foundation, is helping researchers worldwide study the inherited tendency toward psoriasis. The tissue bank has DNA from the white blood cells of more than 250 families affected by the disease. There is particular interest in large families in which psoriasis is both common and spans two or more generations. More recently, the tissue bank has begun research involving families having at least two siblings with psoriasis. People seeking more information or families interested in participating in a study should contact National Psoriasis Tissue Bank Baylor University Medical Center Suite 656, Wadley Tower 3600 Gaston Avenue Dallas, TX 75246 214/820-2635 Fax: 214/820-1296
Where Can I Find More Information about Psoriasis? National Psoriasis Foundation 6600 SW 92nd Avenue, Suite 300 Portland, OR 97223 503/244-7404 800/723-9166 Fax: 503/245-0626 http://www.psoriasis.org The National Psoriasis Foundation provides physician referrals and publishes pamphlets and newsletters that include information on support groups, research, and new drugs and other treatments. The foundation also promotes community awareness of psoriasis.
18 Psoriasis
National Institute of Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse 1 AMS Circle Bethesda, MD 20892-3675 301/495-4484 TTY: 301/565-2966 Fax: 301/718-6366 NIAMS Fast Facts--For health information that is available by fax 24 hours a day, call 301/881-2731 from a fax machine telephone. http://www.niams.nih.gov/ This clearinghouse, a public service sponsored by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), provides information about various forms of these diseases. The clearinghouse distributes patient and professional education materials and also refers people to other sources of information.
More Guideline Sources The guideline above on psoriasis is only one example of the kind of material that you can find online and free of charge. The remainder of this chapter will direct you to other sources which either publish or can help you find additional guidelines on topics related to psoriasis. Many of the guidelines listed below address topics that may be of particular relevance to your specific situation or of special interest to only some patients with psoriasis. Due to space limitations these sources are listed in a concise manner. Do not hesitate to consult the following sources by either using the Internet hyperlink provided, or, in cases where the contact information is provided, contacting the publisher or author directly.
Topic Pages: MEDLINEplus For patients wishing to go beyond guidelines published by specific Institutes of the NIH, the National Library of Medicine has created a vast and patientoriented healthcare information portal called MEDLINEplus. Within this Internet-based system are “health topic pages.” You can think of a health topic page as a guide to patient guides. To access this system, log on to http://www.nlm.nih.gov/medlineplus/healthtopics.html. From there you can either search using the alphabetical index or browse by broad topic areas. Recently, MEDLINEplus listed the following as being relevant to psoriasis:
Guidelines 19
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Guides On Psoriasis Psoriasis http://www.nlm.nih.gov/medlineplus/psoriasis.html Psoriasis http://www.nlm.nih.gov/medlineplus/ency/article/000434.htm Psoriasis - guttate http://www.nlm.nih.gov/medlineplus/ency/article/000822.htm
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Other Guides Psoriatic arthritis http://www.nlm.nih.gov/medlineplus/ency/article/000413.htm
Within the health topic page dedicated to psoriasis, the following was recently recommended to patients: ·
General/Overviews Psoriasis Source: American Academy of Dermatology http://www.aad.org/pamphlets/Psoriasis.html Psoriasis FAQs Source: American Academy of Dermatology http://www.skincarephysicians.com/psoriasisnet/mythsANDfacts.h tm
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Diagnosis/Symptoms Skin Rashes and Other Changes: Self-Care Flowcharts Source: American Academy of Family Physicians http://familydoctor.org/flowcharts/545.html
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Treatment Methotrexate Source: American Academy of Family Physicians http://familydoctor.org/handouts/628.html New Treatments Offer Relief to Millions of Americans With Psoriasis Source: American Academy of Dermatology http://www.aad.org/PressReleases/OffersHope.html
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Psoriatic Arthritis: Treatment Slows Joint Damage Source: Mayo Foundation for Medical Education and Research http://www.mayoclinic.com/invoke.cfm?id=AR00013 ·
Specific Conditions/Aspects Psoriatic Arthritis Source: National Psoriasis Foundation http://www.psoriasis.org/b300.htm
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Children Juvenile Psoriatic Arthritis Source: Arthritis Foundation http://www.arthritis.org/conditions/diseasecenter/juvenilepsoriatic arthritis.asp Psoriasis: The "Dry Skin" Disease Source: American Academy of Dermatology http://www.aad.org/Kids/psoriasis.html
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From the National Institutes of Health Questions and Answers about Psoriasis Source: National Institute of Arthritis and Musculoskeletal and Skin Diseases http://www.niams.nih.gov/hi/topics/psoriasis/psoriafs.htm
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Organizations American Academy of Dermatology http://www.aad.org/ National Institute of Arthritis and Musculoskeletal and Skin Diseases http://www.niams.nih.gov/ National Psoriasis Foundation http://www.psoriasis.org/ PsoriasisNet Source: American Academy of Dermatology http://www.skincarephysicians.com/psoriasisnet/index.htm
Guidelines 21
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Research Psoriasis Causes Disability That Equals Other Major Medical Diseases Source: American Academy of Dermatology http://www.aad.org/PressReleases/psoriasis_causes_disability.html PsoriasisNet Update Source: American Academy of Dermatology http://www.skincarephysicians.com/psoriasisnet/update_current.htm
If you do not find topics of interest when browsing health topic pages, then you can choose to use the advanced search utility of MEDLINEplus at http://www.nlm.nih.gov/medlineplus/advancedsearch.html. This utility is similar to the NIH Search Utility, with the exception that it only includes material linked within the MEDLINEplus system (mostly patient-oriented information). It also has the disadvantage of generating unstructured results. We recommend, therefore, that you use this method only if you have a very targeted search. The Combined Health Information Database (CHID) CHID Online is a reference tool that maintains a database directory of thousands of journal articles and patient education guidelines on psoriasis and related conditions. One of the advantages of CHID over other sources is that it offers summaries that describe the guidelines available, including contact information and pricing. CHID’s general Web site is http://chid.nih.gov/. To search this database, go to http://chid.nih.gov/detail/detail.html. In particular, you can use the advanced search options to look up pamphlets, reports, brochures, and information kits. The following was recently posted in this archive: ·
Handbook for Teens with Psoriasis Source: Portland, OR: National Psoriasis Foundation. 2001. 20 p. Contact: Available from National Psoriasis Foundation. 6600 SW 92nd Avenue, Suite 300, Portland, OR 97223-7195. (800) 723-9166 or (503) 2447404. Fax (503) 245-0626. E-mail:
[email protected]. Website: www.psoriasis.org. Price: Contact NPF for current pricing. Summary: This illustrated booklet serves as an information source for adolescents living with psoriasis and uses a question and answer format to help them gain insight into the disease. The booklet begins by
22 Psoriasis
presenting facts about psoriasis, including what it is, who gets it, what causes it, and how it is treated. This is followed by a description of the types of psoriasis. The booklet then discusses types of psoriasis treatment such as topical agents, ultraviolet light therapies, and systemic medications; the role of the patient in treatment and treatment decisions; and the questions teens need to ask their doctor about psoriasis treatments. Other topics include the impact of psoriasis on self esteem, ways to cope with the emotional aspects of psoriasis, and guiding principles for coping with psoriasis. In addition, the booklet addresses lifestyle and social issues, including the impact of stress, chlorine, sunlight, body or ear piercing, and tattoos on psoriasis; the way to explain psoriasis to new friends or dates; the impact of psoriasis on an intimate relationship; and ways to cover up psoriasis. ·
Informacion General sobre los Tratamientos para la Psoriasis Source: Portland, OR: National Psoriasis Foundation. 2001. 24 p. Contact: Available from National Psoriasis Foundation. 6600 SW 92nd Avenue, Suite 300, Portland, OR 97223-7195. (800) 723-9166 or (503) 2447404. Fax (503) 245-0626. E-mail:
[email protected]. Website: www.psoriasis.org. Price: Contact NPF for current pricing. Summary: This booklet, which is written in Spanish, provides people who have psoriasis with general information on its treatment. Although there is no cure for psoriasis, existing treatment and combinations of treatments are effective in reducing or minimizing its impact. There are generally three levels of treatment for psoriasis. The first level consists of topical medications, including anthralin, calcipotriene, tazarotene, topical retinoids, and topical steroids. If these medications are not effective or appropriate, then a second level of treatment is recommended. This level involves the use of ultraviolet (UV) B light, lasers, and psoralen plus UV A light. The third level of treatment focuses on the use of systemic medications such as cyclosporine, methotrexate, retinoids, and sulfasalazine. The booklet also includes guidelines on the treatment of psoriasis and provides information about the National Psoriasis Foundation. 1 figure.
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Young People and Psoriasis: Infancy Through Adolescence Source: Portland, OR: National Psoriasis Foundation. 1999. 20 p. Contact: National Psoriasis Foundation. 6600 SW 92nd Avenue, Suite 300, Portland, OR 97223-7195. (800) 723-9166 or (503) 244-7404. Fax (503) 2450626. E-mail:
[email protected]. Website: www.psoriasis.org.
Guidelines 23
Summary: This booklet for the general public and young people with psoriasis focuses on the special problems confronting infants, children, and adolescents who have psoriasis. It uses a question-and-answer format to explain what psoriasis is, who gets psoriasis, the different types of psoriasis, the cause of psoriasis, the role of infection and skin injury in psoriasis, the available treatments for psoriasis, and the role of the patient in treating psoriasis. In addition, the booklet answers questions frequently asked by parents or other care givers, offers practical advice for parents and adolescents, presents an interview with a pediatric dermatologist, and lists educational literature available from the National Psoriasis Foundation. ·
Genital Psoriasis Source: Portland, OR: National Psoriasis Foundation. 1998. 12 p. Contact: Available from National Psoriasis Foundation. P.O. Box 9009, Portland, OR 97207-9009. (800) 723-9166 Ext. 12 or (503) 244-7404. Fax (503) 245-0626. E-mail:
[email protected]. Website: www.psoriasis.org. Price: $0.35 each plus shipping and handling; bulk orders available. Summary: This pamphlet provides people who have psoriasis with information on genital psoriasis. Although this type of psoriasis acts much the same as psoriasis elsewhere on the body, its location on or near the tender skin of the reproductive organs requires special treatment. The pamphlet presents methods of treating psoriasis on the pubis, the upper thighs, the creases between thigh and groin, the genitals, the anus and surrounding area, and the buttocks crease. Precautions on the use of ultraviolet light, topical vitamin D, and topical retinoids in treating genital psoriasis are presented. Other topics include relieving itching and getting a correct diagnosis. In addition, the pamphlet offers tips on dealing with genital psoriasis, presents a Bill of Rights for people who have psoriasis, provides information about the National Psoriasis Foundation (NPF), and lists NPF special services.
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Your Diet and Psoriasis: Does Nutrition Play a Role? Source: Portland, OR: National Psoriasis Foundation. 1998. 20 p. Contact: Available from National Psoriasis Foundation. P.O. Box 9009, Portland, OR 97207-9009. (800) 723-9166 Ext. 12 or (503) 244-7404. Fax (503) 245-0626. E-mail:
[email protected]. Website: www.psoriasis.org. Price: $0.35 each plus shipping and handling; bulk orders available. Summary: This pamphlet provides people who have psoriasis with information on the possible role of nutrition in treating it. Although there appears to be little statistical verification that manipulating diet is a valid
24 Psoriasis
treatment option, people who have psoriasis may want to consider changing or supplementing their diet if it seems to improve their condition and does not endanger their overall health. Guidelines on maintaining overall well being, are followed by research findings about psoriasis and diet, focusing on findings about the turkey diet, the low protein diet, starvation and weight loss, oral zinc, fish oil, evening primrose oil, lecithin, shark cartilage, and the Edgar Cayce regimen. Traditional Chinese medicine, herbal remedies, and vitamins and supplements are also discussed. In addition, the pamphlet recommends evaluating diet claims for psoriasis and offers advice on evaluating advertised claims for psoriasis cures and treatments. The pamphlet concludes with information on nutritional resources and on the National Psoriasis Foundation. 10 references. ·
Specific Forms of Psoriasis: Pustular, Guttate, Inverse, Erythrodermic Source: Portland, OR: National Psoriasis Foundation. 1998. 12 p. Contact: Available from National Psoriasis Foundation. P.O. Box 9009, Portland, OR 97207-9009. (800) 723-9166 Ext. 12 or (503) 244-7404. Fax (503) 245-0626. E-mail:
[email protected]. Website: www.psoriasis.org. Price: $0.35 each plus shipping and handling; bulk orders available. Summary: This pamphlet provides people who have psoriasis with information on the triggers, characteristics, and treatment of its specific forms: guttate, pustular, generalized and localized pustular, inverse, and erythrodermic. Guttate psoriasis often starts in childhood or young adulthood. Guttate lesions are droplike and usually appear on the trunk and limbs. This form of psoriasis may resolve on its own, but bland ointments may be needed during the acute eruptive stage. Pustular psoriasis usually occurs in adults and is characterized by white pustules surrounded by red skin. Forms of pustular psoriasis include the von Zumbusch type, palmo-plantar pustulosis, and acrodermatitis continua of Hallopeau. Inverse psoriasis is found in the armpits, in the groin, under the breasts, and in other skin folds around the genitals and buttocks. Steroid creams and ointments are effective in treating this form. Erythrodermic psoriasis is a very inflammatory form characterized by periodic, widespread, fiery redness of the skin. Treatment may include medium potency topical steroids, moisturizers, oatmeal baths, bed rest, methotrexate, acitretin, or cyclosporin. In addition, the pamphlet provides information on the National Psoriasis Foundation (NPF) and special NPF services.
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Psoriasis on Specific Skin Sites Source: Portland, OR: National Psoriasis Foundation. 1998. 12 p.
Guidelines 25
Contact: Available from National Psoriasis Foundation. P.O. Box 9009, Portland, OR 97207-9009. (800) 723-9166 Ext. 12 or (503) 244-7404. Fax (503) 245-0626. E-mail:
[email protected]. Website: www.psoriasis.org. Price: $0.35 each plus shipping and handling; bulk orders available. Summary: This pamphlet provides people who have psoriasis with information on treating specific skin sites, including the face, eyelids, eyes, ears, mouth, skin folds, hands, feet, palms, soles, and nails. The first method of treating facial psoriasis is with moisturizers and Vaseline. Mild topical steroids can be used intermittently. Other drugs and ultraviolet light can also be effective. Eyelid inflammation requires washing the lid margins and eyelashes with tap water and baby shampoo. Special ophthalmic steroid medication is used if scaling on the eyelid must be treated. Topical antibiotics are used to treat conjunctivitis, the most common type of interior eye involvement. Scale buildup that blocks the ear canal should be removed by a physician or by means of an over-the-counter ear cleaning kit. Treatment for oral psoriasis involves topical steroids designed to treat moist areas, while steroid creams and ointments are effective in treating psoriasis on skin folds. General measures for treating psoriasis on the hands and feet include emollients, mild soaps, and soap substitutes. Other methods are traditional topical therapy, psoralen plus ultraviolet light A (PUVA), and systemic therapies. Pustular psoriasis of the palms and soles is normally treated with topical agents; although PUVA or systemic therapies may be needed, as well. The major treatments for nails are topical therapy, intralesional injection of steroids, systemic therapy, and cosmetic repair. The pamphlet provides guidelines on nail care and concludes with information on the National Psoriasis Foundation. ·
Scalp Psoriasis Source: Portland, OR: National Psoriasis Foundation. 1998. 20 p. Contact: Available from National Psoriasis Foundation. P.O. Box 9009, Portland, OR 97207-9009. (800) 723-9166 Ext. 12 or (503) 244-7404. Fax (503) 245-0626. E-mail:
[email protected]. Website: www.psoriasis.org. Price: $0.35 each plus shipping and handling; bulk orders available. Summary: This pamphlet provides people who have psoriasis with information on treating scalp psoriasis. This form, which can range from very mild to very severe, occurs in at least 50 percent of those who have psoriasis. Scalp psoriasis can sometimes cause hair loss, and scalp itching may be troublesome as well. Because there are many options, people need to select scalp treatments that are agreeable to them. The pamphlet discusses various medications in terms of their features and mode of application. Medications include tars, topical steroids, intralesional
26 Psoriasis
steroid scalp injections, anthralin, calcipotriene, tazarotene, antimicrobial therapy, ultraviolet light, medicated shampoos, and systemic medications. Specific considerations for treating the forehead, neck, and ears are presented. Other topics include softening and removing scales from psoriasis lesions before treating them and applying medications effectively. In addition, the pamphlet answers common questions about scalp psoriasis, presents a sample treatment regimen, lists some scalp psoriasis products, and concludes with information on the National Psoriasis Foundation. ·
Overview of Psoriasis Treatments Source: Portland, OR: National Psoriasis Foundation. 1998. 20 p. Contact: National Psoriasis Foundation. 6600 SW 92nd Avenue, Suite 300, Portland, OR 97223-7195. (800) 723-9166 or (503) 244-7404. Fax (503) 2450626. E-mail:
[email protected]. Website: www.psoriasis.org. Summary: This booklet for individuals with psoriasis presents an overview of options for treating psoriasis. Although a wide range of treatments are available, no psoriasis treatment is universally effective. Treatments can be divided into three categories: sunlight and topical agents, phototherapy, and systemic medications. Topical therapies include topical steroids, coal tar, anthralin, topical vitamin D, salicylic acid, tazarotene, occlusion therapy, moisturizer, bath solutions, nonprescription medications, and sunbathing. Phototherapy may involve exposure to ultraviolet light B or the use of psoralen and exposure to ultraviolet light A. Systemic medications include methotrexate, retinoids, sulfasalazine, and cyclosprorine. Therapies may be combined or rotated. In addition, the booklet provides some tips for taking care of the skin and lists educational literature available from the National Psoriasis Foundation. 1 figure and 1 photograph.
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Sunlight and Psoriasis Source: Portland, OR: National Psoriasis Foundation. 1997. 12 p. Contact: Available from National Psoriasis Foundation. P.O. Box 9009, Portland, OR 97207-9009. (800) 723-9166 Ext. 12 or (503) 244-7404. Fax (503) 245-0626. E-mail:
[email protected]. Website: www.psoriasis.org. Price: $0.35 each plus shipping and handling; bulk orders available. Summary: This pamphlet provides people who have psoriasis with information on using sunlight as a treatment option. Therapy involves exposing all affected areas to short multiple exposures of sunlight. However, people who use sunlight therapy must be careful not to get a sunburn because this may cause psoriasis to flare. The pamphlet provides
Guidelines 27
guidelines on selecting a sunscreen and protective glasses, discusses the use of ultraviolet light therapies for sun-sensitive people, identifies the interactions between sunlight and other psoriasis treatments, and presents the warning signs of skin cancer. In addition, the pamphlet provides information on climatotherapy sites, focusing on the Dead Sea. Information about Dead Sea therapy includes the climate in the area, the treatment regimen used, the side effects, and drug interactions. In addition, the pamphlet provides tips for people traveling to the Dead Sea for treatment, lists items to take, and offers suggestions on making travel arrangements. 1 table. ·
Conception, Pregnancy, and Psoriasis Source: Portland, OR: National Psoriasis Foundation. 1996. 12 p. Contact: National Psoriasis Foundation, 6600 SW 92nd Avenue, Suite 300, Portland, OR 97223-7195. (503) 244-7404. (503) 245-0626 (fax). Summary: This booklet for individuals with psoriasis provides general information about psoriasis treatments during conception, pregnancy, and breast feeding. Treatments that should be avoided when trying to conceive a child include oral retinoids, photochemotherapy, methotrexate, and hydroxyurea. Treatments that are safe for pregnant women include some topical medications, phototherapy, and cyclosporine. Women with psoriasis who choose to breast fed should avoid application of topical steroids to the breasts, photochemotherapy, and systemic medications. In addition, the booklet presents information on the genetic aspects of psoriasis and lists educational literature available from the National Psoriasis Foundation.
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Nail Psoriasis: Recognition and Control Source: Schaumburg, IL: Council for Nail Disorders (CND). 1996. 6 p. Contact: Available from Council for Nail Disorders. 930 Meacham Road, Schaumburg, IL 60173. (847) 330-9830. Price: Single copy free. Summary: This pamphlet uses a question and answer format to provide people who have nail psoriasis with information on this condition. Psoriasis affects the nails in up to 50 percent of people with psoriasis of the skin. People who have psoriatic arthritis develop nail psoriasis more often than people who have psoriasis of the skin do. Pits of different shapes, sizes, and depths are the most common signs of nail psoriasis. Psoriatic patches under the nail may cause it to separate from the nail bed. In addition, the skin under the nail may thicken and appear silvery white, yellowish, or brown. Nail psoriasis is among the most difficult forms of psoriasis to treat, and options include topical medications,
28 Psoriasis
ultraviolet light, injection medications, and oral medications such as methotrexate and retinoids. The pamphlet offers suggestions for controlling nail psoriasis and provides information on the Council for Nail Disorders. ·
Psoriasis: How It Makes You Feel Source: Portland, OR: National Psoriasis Foundation. 1996. 24 p. Contact: Available from National Psoriasis Foundation. P.O. Box 9009, Portland, OR 97207-9009. (800) 723-9166 Ext. 12 or (503) 244-7404. Fax (503) 245-0626. E-mail:
[email protected]. Website: www.psoriasis.org. Price: $0.35 each plus shipping and handling; bulk orders available. Summary: This pamphlet provides people who have psoriasis with information on the emotional impact of the disease. The way that people with psoriasis recognize and respond to their emotions may determine how successfully they cope. The pamphlet recommends that people with psoriasis allow themselves to feel angry, sad, and frustrated so that they can start to manage these feelings; recognize feelings as part of the process of learning to live with skin that looks different; talk about psoriasis; take responsibility for treatment choices; seek professional counseling if necessary; and educate themselves about the nature of psoriasis and learn to talk about it factually. The pamphlet then suggests a cognitive therapy strategy for dealing with experiences caused by distortion, disappointment, helplessness, and hopelessness. This is followed by questions and answers about the emotional aspects of living with psoriasis, a personal account, and the role of a person who wants to help someone with psoriasis. In addition, the pamphlet offers tips for people who have psoriasis and tips for others. The pamphlet concludes with information on the National Psoriasis Foundation.
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Psoriasis: Preguntas Comunes y sus Respuestas [Psoriasis: Common Questions and Answers] Source: Portland, OR: National Psoriasis Foundation. 1999. 6 p. Contact: Available from National Psoriasis Foundation. P.O. Box 9009, Portland, OR 97207-9009. (800) 723-9166 Ext. 12 or (503) 244-7404. Fax (503) 245-0626. E-mail:
[email protected]. Website: www.psoriasis.org. Price: $0.35 each plus shipping and handling; bulk orders available. Summary: This pamphlet uses a question and answer format to provide people who have psoriasis with information on this chronic skin disorder. Topics include cause, diagnosis, and treatment; the features of guttate, pustular, inverse, erythrodermic, and arthritic psoriasis; and the
Guidelines 29
parts of the body affected. The pamphlet concludes with information on the National Psoriasis Foundation.
The National Guideline Clearinghouse™ The National Guideline Clearinghouse™ offers hundreds of evidence-based clinical practice guidelines published in the United States and other countries. You can search their site located at http://www.guideline.gov by using the keyword “psoriasis” or synonyms.
Healthfinder™ Healthfinder™ is an additional source sponsored by the U.S. Department of Health and Human Services which offers links to hundreds of other sites that contain healthcare information. This Web site is located at http://www.healthfinder.gov. Again, keyword searches can be used to find guidelines. The following was recently found in this database: ·
FAQ - About Psoriasis Summary: Answers to the questions most often received from patients and the general public about this skin disorder. Source: National Psoriasis Foundation http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=2715
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Psoriasis Information Site Index Summary: Visitors to this site may search this index for links to patient education fact sheets, medical and alternative treatment and therapies for psoriasis , psoriasis statistics, research information, news Source: National Psoriasis Foundation http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=2716
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PsoriasisNet Summary: Links to info about psoriasis and its treatment. Includes a glossary. Source: American Academy of Dermatology http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=6381
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Questions and Answers About Psoriasis Summary: This consumer health information fact sheet contains general information about psoriasis. Source: National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Institutes of Health http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=3778
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Retinoids Summary: In recent years new synthetic derivatives of Vitamin A (retinoids) have been developed for the treatment of various skin conditions, such as severe acne, sun spots, wrinkles, and psoriasis. Source: American Society For Dermatologic Surgery http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=6748
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Skincarephysicians.com Summary: An index to Web pages on psoriasis, eczema, aging skin, acne, melanoma, and actinic keratoses. Source: American Academy of Dermatology http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=6380
Guidelines 31
·
What is Psoriasis? Summary: This consumer health information fact sheet provides basic information about this non-contagious skin disorder. Source: National Psoriasis Foundation http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=2714
The NIH Search Utility After browsing the references listed at the beginning of this chapter, you may want to explore the NIH Search Utility. This allows you to search for documents on over 100 selected Web sites that comprise the NIH-WEBSPACE. Each of these servers is “crawled” and indexed on an ongoing basis. Your search will produce a list of various documents, all of which will relate in some way to psoriasis. The drawbacks of this approach are that the information is not organized by theme and that the references are often a mix of information for professionals and patients. Nevertheless, a large number of the listed Web sites provide useful background information. We can only recommend this route, therefore, for relatively rare or specific disorders, or when using highly targeted searches. To use the NIH search utility, visit the following Web page: http://search.nih.gov/index.html. NORD (The National Organization of Rare Disorders, Inc.) NORD provides an invaluable service to the public by publishing, for a nominal fee, short yet comprehensive guidelines on over 1,000 diseases. NORD primarily focuses on rare diseases that might not be covered by the previously listed sources. NORD’s Web address is www.rarediseases.org. To see if a recent fact sheet has been published on psoriasis, simply go to the following hyperlink: http://www.rarediseases.org/cgi-bin/nord/alphalist. A complete guide on psoriasis can be purchased from NORD for a nominal fee.
32 Psoriasis
PEDBASE Similar to NORD, PEDBASE covers relatively rare disorders, limited mainly to pediatric conditions. PEDBASE was designed by Dr. Alan Gandy. To access the database, which is more oriented to researchers than patients, you can view the current list of conditions covered at the following Web site: http://www.icondata.com/health/pedbase/pedlynx.htm.
Additional Web Sources A number of Web sites that often link to government sites are available to the public. These can also point you in the direction of essential information. The following is a representative sample: ·
AOL: http://search.aol.com/cat.adp?id=168&layer=&from=subcats
·
drkoop.comÒ: http://www.drkoop.com/conditions/ency/index.html
·
Family Village: http://www.familyvillage.wisc.edu/specific.htm
·
Google: http://directory.google.com/Top/Health/Conditions_and_Diseases/
·
Med Help International: http://www.medhelp.org/HealthTopics/A.html
·
Open Directory Project: http://dmoz.org/Health/Conditions_and_Diseases/
·
Yahoo.com: http://dir.yahoo.com/Health/Diseases_and_Conditions/
·
WebMDÒHealth: http://my.webmd.com/health_topics
Vocabulary Builder The material in this chapter may have contained a number of unfamiliar words. The following Vocabulary Builder introduces you to terms used in this chapter that have not been covered in the previous chapter: Acitretin: An oral retinoid effective in the treatment of psoriasis. It is the major metabolite of etretinate with the advantage of a much shorter half-life when compared with etretinate. [NIH] Acne: An inflammatory disease of the pilosebaceous unit, the specific type usually being indicated by a modifying term; frequently used alone to designate common acne, or acne vulgaris. [EU] Acrodermatitis:
Inflammation involving the skin of the extremities,
Guidelines 33
especially the hands and feet. Several forms are known, some idiopathic and some hereditary. The infantile form is called Gianotti-Crosti syndrome. [NIH] Adolescence: The period of life beginning with the appearance of secondary sex characteristics and terminating with the cessation of somatic growth. The years usually referred to as adolescence lie between 13 and 18 years of age. [NIH]
Anemia: A reduction in the number of circulating erythrocytes or in the quantity of hemoglobin. [NIH] Anthralin: An anti-inflammatory anthracene derivative used for the treatment of dermatoses, especially psoriasis. It may cause folliculitis. [NIH] Antibiotic: A chemical substance produced by a microorganism which has the capacity, in dilute solutions, to inhibit the growth of or to kill other microorganisms. Antibiotics that are sufficiently nontoxic to the host are used as chemotherapeutic agents in the treatment of infectious diseases of man, animals and plants. [EU] Antimicrobial: Killing microorganisms, or suppressing their multiplication or growth. [EU] Anus: The distal or terminal orifice of the alimentary canal. [EU] Balanitis: Inflammation of the glans penis; it is usually associated with phimosis. [EU] Baths: The immersion or washing of the body or any of its parts in water or other medium for cleansing or medical treatment. It includes bathing for personal hygiene as well as for medical purposes with the addition of therapeutic agents, such as alkalines, antiseptics, oil, etc. [NIH] Biopsy: The removal and examination, usually microscopic, of tissue from the living body, performed to establish precise diagnosis. [EU] Blister: Visible accumulations of fluid within or beneath the epidermis. [NIH] Chlorine: A greenish-yellow, diatomic gas that is a member of the halogen family of elements. It has the atomic symbol Cl, atomic number 17, and atomic weight 70.906. It is a powerful irritant that can cause fatal pulmonary edema. Chlorine is used in manufacturing, as a reagent in synthetic chemistry, for water purification, and in the production of chlorinated lime, which is used in fabric bleaching. [NIH] Chronic: Persisting over a long period of time. [EU] Coal: A natural fuel formed by partial decomposition of vegetable matter under certain environmental conditions. [NIH] Conception: The onset of pregnancy, marked by implantation of the blastocyst; the formation of a viable zygote. [EU] Conjunctivitis:
Inflammation of the conjunctiva, generally consisting of
34 Psoriasis
conjunctival hyperaemia associated with a discharge. [EU] Coronary: Encircling in the manner of a crown; a term applied to vessels; nerves, ligaments, etc. The term usually denotes the arteries that supply the heart muscle and, by extension, a pathologic involvement of them. [EU] Dermatology: A medical specialty concerned with the skin, its structure, functions, diseases, and treatment. [NIH] Eczema: A pruritic papulovesicular dermatitis occurring as a reaction to many endogenous and exogenous agents, characterized in the acute stage by erythema, edema associated with a serous exudate between the cells of the epidermis (spongiosis) and an inflammatory infiltrate in the dermis, oozing and vesiculation, and crusting and scaling; and in the more chronic stages by lichenification or thickening or both, signs of excoriations, and hyperpigmentation or hypopigmentation or both. Atopic dermatitis is the most common type of dermatitis. Called also eczematous dermatitis. [EU] Emollient: Softening or soothing; called also malactic. [EU] Fatigue: The state of weariness following a period of exertion, mental or physical, characterized by a decreased capacity for work and reduced efficiency to respond to stimuli. [NIH] Friction: Surface resistance to the relative motion of one body against the rubbing, sliding, rolling, or flowing of another with which it is in contact. [NIH]
Genitourinary: Pertaining to the genital and urinary organs; urogenital; urinosexual. [EU] Groin: The external junctural region between the lower part of the abdomen and the thigh. [NIH] Hydroxyurea: An antineoplastic agent that inhibits DNA synthesis through the inhibition of ribonucleoside diphosphate reductase. [NIH] Hyperhomocysteinemia: An inborn error of methionone metabolism which produces an excess of homocysteine in the blood. It is often caused by a deficiency of cystathionine beta-synthase and is a risk factor for coronary vascular disease. [NIH] Hypertension: Persistently high arterial blood pressure. Various criteria for its threshold have been suggested, ranging from 140 mm. Hg systolic and 90 mm. Hg diastolic to as high as 200 mm. Hg systolic and 110 mm. Hg diastolic. Hypertension may have no known cause (essential or idiopathic h.) or be associated with other primary diseases (secondary h.). [EU] Inflammation: A pathological process characterized by injury or destruction of tissues caused by a variety of cytologic and chemical reactions. It is usually manifested by typical signs of pain, heat, redness, swelling, and loss of function. [NIH]
Guidelines 35
Lesion: Any pathological or traumatic discontinuity of tissue or loss of function of a part. [EU] Lithium: Lithium. An element in the alkali metals family. It has the atomic symbol Li, atomic number 3, and atomic weight 6.94. Salts of lithium are used in treating manic-depressive disorders. [NIH] Melanoma: A tumour arising from the melanocytic system of the skin and other organs. When used alone the term refers to malignant melanoma. [EU] Methotrexate: An antineoplastic antimetabolite with immunosuppressant properties. It is an inhibitor of dihydrofolate reductase and prevents the formation of tetrahydrofolate, necessary for synthesis of thymidylate, an essential component of DNA. [NIH] Nausea: An unpleasant sensation, vaguely referred to the epigastrium and abdomen, and often culminating in vomiting. [EU] Ointments: Semisolid preparations used topically for protective emollient effects or as a vehicle for local administration of medications. Ointment bases are various mixtures of fats, waxes, animal and plant oils and solid and liquid hydrocarbons. [NIH] Ophthalmic: Pertaining to the eye. [EU] Oral: Pertaining to the mouth, taken through or applied in the mouth, as an oral medication or an oral thermometer. [EU] Photochemotherapy: Therapy using oral or topical photosensitizing agents with subsequent exposure to light. [NIH] Phototherapy: Treatment of disease by exposure to light, especially by variously concentrated light rays or specific wavelengths. [NIH] Psoriasis: A common genetically determined, chronic, inflammatory skin disease characterized by rounded erythematous, dry, scaling patches. The lesions have a predilection for nails, scalp, genitalia, extensor surfaces, and the lumbosacral region. Accelerated epidermopoiesis is considered to be the fundamental pathologic feature in psoriasis. [NIH] Pustular: Pertaining to or of the nature of a pustule; consisting of pustules (= a visible collection of pus within or beneath the epidermis). [EU] Recurrence: The return of a sign, symptom, or disease after a remission. [NIH] Retinoids: Derivatives of vitamin A. Used clinically in the treatment of severe cystic acne, psoriasis, and other disorders of keratinization. Their possible use in the prophylaxis and treatment of cancer is being actively explored. [NIH] Soaps: Sodium or potassium salts of long chain fatty acids. These detergent substances are obtained by boiling natural oils or fats with caustic alkali. Sodium soaps are harder and are used as topical anti-infectives and vehicles
36 Psoriasis
in pills and liniments; potassium soaps are soft, used as vehicles for ointments and also as topical antimicrobials. [NIH] Spectrum: A charted band of wavelengths of electromagnetic vibrations obtained by refraction and diffraction. By extension, a measurable range of activity, such as the range of bacteria affected by an antibiotic (antibacterial s.) or the complete range of manifestations of a disease. [EU] Squamous: Scaly, or platelike. [EU] Steroid: A group name for lipids that contain a hydrogenated cyclopentanoperhydrophenanthrene ring system. Some of the substances included in this group are progesterone, adrenocortical hormones, the gonadal hormones, cardiac aglycones, bile acids, sterols (such as cholesterol), toad poisons, saponins, and some of the carcinogenic hydrocarbons. [EU] Streptococcus: A genus of gram-positive, coccoid bacteria whose organisms occur in pairs or chains. No endospores are produced. Many species exist as commensals or parasites on man or animals with some being highly pathogenic. A few species are saprophytes and occur in the natural environment. [NIH] Sunburn: An injury to the skin causing erythema, tenderness, and sometimes blistering and resulting from excessive exposure to the sun. The reaction is produced by the ultraviolet radiation in sunlight. [NIH] Systemic: Pertaining to or affecting the body as a whole. [EU] Topical: Pertaining to a particular surface area, as a topical anti-infective applied to a certain area of the skin and affecting only the area to which it is applied. [EU] Toxic: Pertaining to, due to, or of the nature of a poison or toxin; manifesting the symptoms of severe infection. [EU] Venereal: Pertaining or related to or transmitted by sexual contact. [EU]
Seeking Guidance 37
CHAPTER 2. SEEKING GUIDANCE Overview Some patients are comforted by the knowledge that a number of organizations dedicate their resources to helping people with psoriasis. These associations can become invaluable sources of information and advice. Many associations offer aftercare support, financial assistance, and other important services. Furthermore, healthcare research has shown that support groups often help people to better cope with their conditions.9 In addition to support groups, your physician can be a valuable source of guidance and support. Therefore, finding a physician that can work with your unique situation is a very important aspect of your care. In this chapter, we direct you to resources that can help you find patient organizations and medical specialists. We begin by describing how to find associations and peer groups that can help you better understand and cope with psoriasis. The chapter ends with a discussion on how to find a doctor that is right for you.
Associations and Psoriasis As mentioned by the Agency for Healthcare Research and Quality, sometimes the emotional side of an illness can be as taxing as the physical side.10 You may have fears or feel overwhelmed by your situation. Everyone has different ways of dealing with disease or physical injury. Your attitude, your expectations, and how well you cope with your condition can all Churches, synagogues, and other houses of worship might also have groups that can offer you the social support you need. 10 This section has been adapted from http://www.ahcpr.gov/consumer/diaginf5.htm. 9
38 Psoriasis
influence your well-being. This is true for both minor conditions and serious illnesses. For example, a study on female breast cancer survivors revealed that women who participated in support groups lived longer and experienced better quality of life when compared with women who did not participate. In the support group, women learned coping skills and had the opportunity to share their feelings with other women in the same situation. In addition to associations or groups that your doctor might recommend, we suggest that you consider the following list (if there is a fee for an association, you may want to check with your insurance provider to find out if the cost will be covered): ·
American Autoimmune Related Diseases Association, Inc Address: American Autoimmune Related Diseases Association, Inc. Michigan National Bank Building, 15475 Gratiot Avenue, Detroit, MI 48205 Telephone: (313) 371-8600 Toll-free: (800) 598- 4668 Fax: (313) 371-6002 Email:
[email protected] Web Site: http://www.aarda.org/ Background: The American Autoimmune Related Diseases Association, Inc. (AARDA) is a national not-for-profit voluntary health agency dedicated to bringing a national focus to autoimmunity, a major cause of serious chronic diseases. The Association was founded for the purposes of supporting research to find a cure for autoimmune diseases and providing services to affected individuals. In addition, the Association's goals include increasing the public's awareness that autoimmunity is the cause of more than 80 serious chronic diseases; bringing national focus and collaborative effort among state and national voluntary health groups that represent autoimmune diseases; and serving as a national advocate for individuals and families affected by the physical, emotional, and financial effects of autoimmune disease. The American Autoimmune Related Diseases Association produces educational and support materials including fact sheets, brochures, pamphlets, and a newsletter entitled 'In Focus'. Relevant area(s) of interest: Psoriasis, Scleroderma, Vitiligo
·
American Skin Association Address: American Skin Association 150 East 58th Street, 33rd Floor, New York, NY 10155-0002 Telephone: (212) 753-8260 Toll-free: (800) 499-7546
Seeking Guidance 39
Fax: (212) 688-6547 Email:
[email protected] Web Site: None Background: The American Skin Association (ASA) is a national nonprofit organization dedicated to building a network of lay people to achieve more effective prevention, treatment, and cure of skin disorders. ASA programs include generating support for skin research and providing information and education to the public regarding the skin and its disorders. ASA's mission is to identify, promote, and support research in biology of the skin, stimulate the transfer of advances in the field to clinical care of dermatology patients, and educate the community regarding diseases, symptoms, and care of the skin. To meet this goal, the Association engages in fundraising to support research and develops local chapters throughout the country. Information on a wide spectrum of skin disorders is available including 'Your Newborn's Skin and the Sun,' 'Ultraviolet Index: What You Need To Know,' 'Outdoor Sports and Your Skin,' and 'Proper Skin Care Can Make Gardening a Bed of Roses.' Founded in 1987, ASA also publishes 'SkinFacts,' a quarterly newsletter. Relevant area(s) of interest: Psoriasis, Vitiligo ·
Canadian Psoriasis Foundation / La Fondation Canadienne duPsoriasis Address: Canadian Psoriasis Foundation / La Fondation Canadienne du Psoriasis 824 Meath Street, Ottawa, K1Z 6E8, Canada Telephone: (613) 728-4000 Toll-free: (800) 265-0926 Fax: (613) 728-8913 Email:
[email protected] Web Site: http://www.psoriasis.ca Background: The Canadian Psoriasis Foundation/La fondation canadienne du psoriasis is a not-for-profit voluntary health organization dedicated to promoting the health and improving the quality of life of Canadians affected by psoriasis through education, advocacy, service, and research. Psoriasis is a common, recurrent skin disorder characterized by thickened patches of reddish, inflamed skin and silvery or grayish, dry skin scaling due to abnormally rapid growth and turnover of skin cells. Although the exact underlying cause of psoriasis is unknown, the disease often appears to be familial. The Canadian Psoriasis Foundation was established in 1983 and currently has 16 chapters and approximately 1,300 members. The Foundation is committed to providing current information on psoriasis to inquirers including affected individuals, family members, health care
40 Psoriasis
professionals, and the general public; distributing educational literature to schools, libraries, hospitals, and clinics across Canada; publishing regular newsletters with feature articles on traditional and nontraditional psoriasis treatments; and conducting regular conferences and workshops. In addition, the organization provides referrals to dermatology facilities in Canada; promotes and supports research; promotes public and professional awareness of the disorder and the needs of affected individuals; and establishes and maintains local chapters in cities throughout Canada, providing a national communication network. The Foundation's educational materials include booklets, pamphlets on the various forms of psoriasis, a treatment series, and a quarterly newsletter entitled 'CPF Newsletter,' which includes information on new and existing treatments, research developments, and organizational activities on a national and local basis. The Canadian Psoriasis Foundation also has a web site on the Internet. Relevant area(s) of interest: Arthropathic Psoriasis, Psoriasis ·
March of Dimes Birth Defects Foundation Address: March of Dimes Birth Defects Foundation 1275 Mamaroneck Avenue, White Plains, NY 10605 Telephone: (914) 428-7100 Toll-free: (888) 663-4637 Fax: (914) 997-4763 Email:
[email protected] Web Site: http://www.modimes.org Background: The March of Dimes Birth Defects Foundation is a national not-for- profit organization that was established in 1938. The mission of the Foundation is to improve the health of babies by preventing birth defects and infant mortality. Through the Campaign for Healthier Babies, the March of Dimes funds programs of research, community services, education, and advocacy. Educational programs that seek to prevent birth defects are important to the Foundation and to that end it produces a wide variety of printed informational materials and videos. The March of Dimes public health educational materials provide information encouraging health- enhancing behaviors that lead to a healthy pregnancy and a healthy baby. Relevant area(s) of interest: Epidermolysis Bullosa, Psoriasis
·
National Psoriasis Foundation Address: National Psoriasis Foundation 6600 SW 92nd Avenue, Suite 300, Portland, OR 97223-7195
Seeking Guidance 41
Telephone: (503) 244-7404 Toll-free: (800) 723-9166 Fax: (503) 245-0626 Email:
[email protected] Web Site: http://www.psoriasis.org/ Background: The National Psoriasis Foundation is a voluntary not-forprofit organization dedicated to providing support to and improving the quality of life for individuals with psoriasis, a chronic skin disorder; educating the public; and promoting and supporting research for psoriasis. Established in 1968 by affected individuals, physicians, and researchers, the National Psoriasis Foundation is committed to publishing the most current information on psoriasis and providing a forum for affected individuals to speak out. The organization promotes funding for psoriasis research and seeks to establish an alliance between affected people, the medical and scientific communities, and the pharmaceutical industry. The National Psoriasis Foundation promotes patient advocacy and legislation beneficial to affected individuals; provides appropriate referrals (e.g., to support groups); and offers a variety of educational materials. These materials include a regular newsletter and reports. Relevant area(s) of interest: Psoriasis ·
Psoriatic Arthropathy Alliance Address: Psoriatic Arthropathy Alliance P.O. Box 111, St. Albans, Hertfordshire, AL2 3JQ, United Kingdom Telephone: (192) 367- 2837 Toll-free: (800) 598- 4668 Fax: (192) 367-2837 Email:
[email protected] Web Site: http://www.paalliance.org Background: The Psoriatic Arthropathic Alliance (PAA) is a non-profit support and informational organization for individuals affected by psoriatic arthropathy (PA) and other related conditions. Psoriatic arthropathy is a rheumatoid-like arthritic condition that is associated with psoriasis of the skin or nails, and a negative rheumatoid arthritis (RA) serology laboratory test. The disorder is more common in females than males. The mission of the PAA is to provide support and information to individuals affected by PA. Established in 1993, the Alliance also monitors medical and health care services and supports research into the causes, prevention, and management of PA and related conditions. In addition, the group acts as a lobbyist for patient rights. Consisting of 1,000 members, the Alliance produces educational materials
42 Psoriasis
that are available to medical professionals, medical students, and the general public. PAA publishes a periodic newsletter and a journal and offers a networking service. Relevant area(s) of interest: Psoriasis
Finding More Associations There are a number of directories that list additional medical associations that you may find useful. While not all of these directories will provide different information than what is listed above, by consulting all of them, you will have nearly exhausted all sources for patient associations.
The National Health Information Center (NHIC) The National Health Information Center (NHIC) offers a free referral service to help people find organizations that provide information about psoriasis. For more information, see the NHIC’s Web site at http://www.health.gov/NHIC/ or contact an information specialist by calling 1-800-336-4797.
DIRLINE A comprehensive source of information on associations is the DIRLINE database maintained by the National Library of Medicine. The database comprises some 10,000 records of organizations, research centers, and government institutes and associations which primarily focus on health and biomedicine. DIRLINE is available via the Internet at the following Web site: http://dirline.nlm.nih.gov/. Simply type in “psoriasis” (or a synonym) or the name of a topic, and the site will list information contained in the database on all relevant organizations.
The Combined Health Information Database Another comprehensive source of information on healthcare associations is the Combined Health Information Database. Using the “Detailed Search” option, you will need to limit your search to “Organizations” and “psoriasis”. Type the following hyperlink into your Web browser: http://chid.nih.gov/detail/detail.html. To find associations, use the drop
Seeking Guidance 43
boxes at the bottom of the search page where “You may refine your search by.” For publication date, select “All Years.” Then, select your preferred language and the format option “Organization Resource Sheet.” By making these selections and typing in “psoriasis” (or synonyms) into the “For these words:” box, you will only receive results on organizations dealing with psoriasis. You should check back periodically with this database since it is updated every 3 months. The National Organization for Rare Disorders, Inc. The National Organization for Rare Disorders, Inc. has prepared a Web site that provides, at no charge, lists of associations organized by specific diseases. You can access this database at the following Web site: http://www.rarediseases.org/cgi-bin/nord/searchpage. Select the option called “Organizational Database (ODB)” and type “psoriasis” (or a synonym) in the search box.
Online Support Groups In addition to support groups, commercial Internet service providers offer forums and chat rooms for people with different illnesses and conditions. WebMDÒ, for example, offers such a service at their Web site: http://boards.webmd.com/roundtable. These online self-help communities can help you connect with a network of people whose concerns are similar to yours. Online support groups are places where people can talk informally. If you read about a novel approach, consult with your doctor or other healthcare providers, as the treatments or discoveries you hear about may not be scientifically proven to be safe and effective. The following Internet site may be of particular interest: ·
Psoriasis Society of Canada http://www.psoriasissociety.org
44 Psoriasis
Finding Doctors One of the most important aspects of your treatment will be the relationship between you and your doctor or specialist. All patients with psoriasis must go through the process of selecting a physician. While this process will vary from person to person, the Agency for Healthcare Research and Quality makes a number of suggestions, including the following:11 ·
If you are in a managed care plan, check the plan's list of doctors first.
·
Ask doctors or other health professionals who work with doctors, such as hospital nurses, for referrals.
·
Call a hospital’s doctor referral service, but keep in mind that these services usually refer you to doctors on staff at that particular hospital. The services do not have information on the quality of care that these doctors provide.
·
Some local medical societies offer lists of member doctors. Again, these lists do not have information on the quality of care that these doctors provide.
Additional steps you can take to locate doctors include the following: ·
Check with the associations listed earlier in this chapter.
·
Information on doctors in some states is available on the Internet at http://www.docboard.org. This Web site is run by “Administrators in Medicine,” a group of state medical board directors.
·
The American Board of Medical Specialties can tell you if your doctor is board certified. “Certified” means that the doctor has completed a training program in a specialty and has passed an exam, or “board,” to assess his or her knowledge, skills, and experience to provide quality patient care in that specialty. Primary care doctors may also be certified as specialists. The AMBS Web site is located at http://www.abms.org/newsearch.asp.12 You can also contact the ABMS by phone at 1-866-ASK-ABMS.
·
You can call the American Medical Association (AMA) at 800-665-2882 for information on training, specialties, and board certification for many licensed doctors in the United States. This information also can be found in “Physician Select” at the AMA's Web site: http://www.amaassn.org/aps/amahg.htm.
This section is adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm. While board certification is a good measure of a doctor's knowledge, it is possible to receive quality care from doctors who are not board certified. 11 12
Seeking Guidance 45
If the previous sources did not meet your needs, you may want to log on to the Web site of the National Organization for Rare Disorders (NORD) at http://www.rarediseases.org/. NORD maintains a database of doctors with expertise in various rare diseases. The Metabolic Information Network (MIN), 800-945-2188, also maintains a database of physicians with expertise in various metabolic diseases.
Finding a Dermatologist To find a dermatologist in your area, you can use the “Find a Dermatologist” search engine provided by the American Academy of Dermatology. With a membership of 13,000, the American Academy of Dermatology represents virtually all practicing dermatologists in the United States and Canada. Type the following Web address into your browser to begin your search: http://www.aad.org/DermSearch/index.html. To search for dermatologists by U.S. state, enter your state into the search box and click “Search.” To search for dermatologists practicing outside the U.S., select “international members.” Enter your country and click the “Search” button.
Selecting Your Doctor13 When you have compiled a list of prospective doctors, call each of their offices. First, ask if the doctor accepts your health insurance plan and if he or she is taking new patients. If the doctor is not covered by your plan, ask yourself if you are prepared to pay the extra costs. The next step is to schedule a visit with your chosen physician. During the first visit you will have the opportunity to evaluate your doctor and to find out if you feel comfortable with him or her. Ask yourself, did the doctor: ·
Give me a chance to ask questions about psoriasis?
·
Really listen to my questions?
·
Answer in terms I understood?
·
Show respect for me?
·
Ask me questions?
·
Make me feel comfortable?
·
Address the health problem(s) I came with?
13 This
section has been adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm.
46 Psoriasis
·
Ask me my preferences about different kinds of treatments for psoriasis?
·
Spend enough time with me?
Trust your instincts when deciding if the doctor is right for you. But remember, it might take time for the relationship to develop. It takes more than one visit for you and your doctor to get to know each other.
Working with Your Doctor14 Research has shown that patients who have good relationships with their doctors tend to be more satisfied with their care and have better results. Here are some tips to help you and your doctor become partners: ·
You know important things about your symptoms and your health history. Tell your doctor what you think he or she needs to know.
·
It is important to tell your doctor personal information, even if it makes you feel embarrassed or uncomfortable.
·
Bring a “health history” list with you (and keep it up to date).
·
Always bring any medications you are currently taking with you to the appointment, or you can bring a list of your medications including dosage and frequency information. Talk about any allergies or reactions you have had to your medications.
·
Tell your doctor about any natural or alternative medicines you are taking.
·
Bring other medical information, such as x-ray films, test results, and medical records.
·
Ask questions. If you don't, your doctor will assume that you understood everything that was said.
·
Write down your questions before your visit. List the most important ones first to make sure that they are addressed.
·
Consider bringing a friend with you to the appointment to help you ask questions. This person can also help you understand and/or remember the answers.
·
Ask your doctor to draw pictures if you think that this would help you understand.
This section has been adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm.
14
Seeking Guidance 47
·
Take notes. Some doctors do not mind if you bring a tape recorder to help you remember things, but always ask first.
·
Let your doctor know if you need more time. If there is not time that day, perhaps you can speak to a nurse or physician assistant on staff or schedule a telephone appointment.
·
Take information home. Ask for written instructions. Your doctor may also have brochures and audio and videotapes that can help you.
·
After leaving the doctor's office, take responsibility for your care. If you have questions, call. If your symptoms get worse or if you have problems with your medication, call. If you had tests and do not hear from your doctor, call for your test results. If your doctor recommended that you have certain tests, schedule an appointment to get them done. If your doctor said you should see an additional specialist, make an appointment.
By following these steps, you will enhance the relationship you will have with your physician.
Broader Health-Related Resources In addition to the references above, the NIH has set up guidance Web sites that can help patients find healthcare professionals. These include:15 ·
Caregivers: http://www.nlm.nih.gov/medlineplus/caregivers.html
·
Choosing a Doctor or Healthcare Service: http://www.nlm.nih.gov/medlineplus/choosingadoctororhealthcareserv ice.html
·
Hospitals and Health Facilities: http://www.nlm.nih.gov/medlineplus/healthfacilities.html
Vocabulary Builder The following vocabulary builder provides definitions of words used in this chapter that have not been defined in previous chapters:
You can access this information at: http://www.nlm.nih.gov/medlineplus/healthsystem.html.
15
48 Psoriasis
Arthropathy: Any joint disease. [EU] Autoimmunity: Process whereby the immune system reacts against the body's own tissues. Autoimmunity may produce or be caused by autoimmune diseases. [NIH] Serology: The study of serum, especially of antigen-antibody reactions in vitro. [NIH] Vitiligo: A disorder consisting of areas of macular depigmentation, commonly on extensor aspects of extremities, on the face or neck, and in skin folds. Age of onset is often in young adulthood and the condition tends to progress gradually with lesions enlarging and extending until a quiescent state is reached. [NIH]
Clinical Trials 49
CHAPTER 3. CLINICAL TRIALS AND PSORIASIS Overview Very few medical conditions have a single treatment. The basic treatment guidelines that your physician has discussed with you, or those that you have found using the techniques discussed in Chapter 1, may provide you with all that you will require. For some patients, current treatments can be enhanced with new or innovative techniques currently under investigation. In this chapter, we will describe how clinical trials work and show you how to keep informed of trials concerning psoriasis.
What Is a Clinical Trial?16 Clinical trials involve the participation of people in medical research. Most medical research begins with studies in test tubes and on animals. Treatments that show promise in these early studies may then be tried with people. The only sure way to find out whether a new treatment is safe, effective, and better than other treatments for psoriasis is to try it on patients in a clinical trial.
The discussion in this chapter has been adapted from the NIH and the NEI: www.nei.nih.gov/netrials/ctivr.htm.
16
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What Kinds of Clinical Trials Are There? Clinical trials are carried out in three phases: ·
Phase I. Researchers first conduct Phase I trials with small numbers of patients and healthy volunteers. If the new treatment is a medication, researchers also try to determine how much of it can be given safely.
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Phase II. Researchers conduct Phase II trials in small numbers of patients to find out the effect of a new treatment on psoriasis.
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Phase III. Finally, researchers conduct Phase III trials to find out how new treatments for psoriasis compare with standard treatments already being used. Phase III trials also help to determine if new treatments have any side effects. These trials--which may involve hundreds, perhaps thousands, of people--can also compare new treatments with no treatment. How Is a Clinical Trial Conducted?
Various organizations support clinical trials at medical centers, hospitals, universities, and doctors' offices across the United States. The “principal investigator” is the researcher in charge of the study at each facility participating in the clinical trial. Most clinical trial researchers are medical doctors, academic researchers, and specialists. The “clinic coordinator” knows all about how the study works and makes all the arrangements for your visits. All doctors and researchers who take part in the study on psoriasis carefully follow a detailed treatment plan called a protocol. This plan fully explains how the doctors will treat you in the study. The “protocol” ensures that all patients are treated in the same way, no matter where they receive care. Clinical trials are controlled. This means that researchers compare the effects of the new treatment with those of the standard treatment. In some cases, when no standard treatment exists, the new treatment is compared with no treatment. Patients who receive the new treatment are in the treatment group. Patients who receive a standard treatment or no treatment are in the “control” group. In some clinical trials, patients in the treatment group get a new medication while those in the control group get a placebo. A placebo is a harmless substance, a “dummy” pill, that has no effect on psoriasis. In other clinical trials, where a new surgery or device (not a medicine) is being tested, patients in the control group may receive a “sham treatment.” This
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treatment, like a placebo, has no effect on psoriasis and does not harm patients. Researchers assign patients “randomly” to the treatment or control group. This is like flipping a coin to decide which patients are in each group. If you choose to participate in a clinical trial, you will not know which group you will be appointed to. The chance of any patient getting the new treatment is about 50 percent. You cannot request to receive the new treatment instead of the placebo or sham treatment. Often, you will not know until the study is over whether you have been in the treatment group or the control group. This is called a “masked” study. In some trials, neither doctors nor patients know who is getting which treatment. This is called a “double masked” study. These types of trials help to ensure that the perceptions of the patients or doctors will not affect the study results. Natural History Studies Unlike clinical trials in which patient volunteers may receive new treatments, natural history studies provide important information to researchers on how psoriasis develops over time. A natural history study follows patient volunteers to see how factors such as age, sex, race, or family history might make some people more or less at risk for psoriasis. A natural history study may also tell researchers if diet, lifestyle, or occupation affects how a disease or disorder develops and progresses. Results from these studies provide information that helps answer questions such as: How fast will a disease or disorder usually progress? How bad will the condition become? Will treatment be needed? What Is Expected of Patients in a Clinical Trial? Not everyone can take part in a clinical trial for a specific disease or disorder. Each study enrolls patients with certain features or eligibility criteria. These criteria may include the type and stage of disease or disorder, as well as, the age and previous treatment history of the patient. You or your doctor can contact the sponsoring organization to find out more about specific clinical trials and their eligibility criteria. If you are interested in joining a clinical trial, your doctor must contact one of the trial's investigators and provide details about your diagnosis and medical history. If you participate in a clinical trial, you may be required to have a number of medical tests. You may also need to take medications and/or undergo
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surgery. Depending upon the treatment and the examination procedure, you may be required to receive inpatient hospital care. Or, you may have to return to the medical facility for follow-up examinations. These exams help find out how well the treatment is working. Follow-up studies can take months or years. However, the success of the clinical trial often depends on learning what happens to patients over a long period of time. Only patients who continue to return for follow-up examinations can provide this important long-term information.
Recent Trials on Psoriasis The National Institutes of Health and other organizations sponsor trials on various diseases and disorders. Because funding for research goes to the medical areas that show promising research opportunities, it is not possible for the NIH or others to sponsor clinical trials for every disease and disorder at all times. The following lists recent trials dedicated to psoriasis.17 If the trial listed by the NIH is still recruiting, you may be eligible. If it is no longer recruiting or has been completed, then you can contact the sponsors to learn more about the study and, if published, the results. Further information on the trial is available at the Web site indicated. Please note that some trials may no longer be recruiting patients or are otherwise closed. Before contacting sponsors of a clinical trial, consult with your physician who can help you determine if you might benefit from participation. ·
Conditioning, the Placebo Effect, and Psoriasis Condition(s): Psoriasis Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Purpose - Excerpt: This study uses the psychological principle known as classical conditioning to try to improve the standard treatment of psoriasis. Classical conditioning is a process of behavioral modification in which a person learns to connect a certain response-in this case, improvement of psoriasis-with a new action, or stimulus-in this case, application of an inactive cream. The goal of this study is to show that people with psoriasis who are maintained on corticosteroid cream part of the time and an inactive (placebo) cream at other times will need a lower total amount of active medication over time than will people who are treated only with the active drug. Phase(s): Phase I
17
These are listed at www.ClinicalTrials.gov.
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Study Type: Interventional Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00005922;jsessionid=70E1481 55114A228E0D24848C469E326 ·
Micellar Paclitaxel to Treat Severe Psoriasis Condition(s): Psoriasis Study Status: This study is currently recruiting patients. Sponsor(s): National Cancer Institute (NCI) Purpose - Excerpt: This study will evaluate the safety and effectiveness of micellar paclitaxel for treating severe psoriasis. Paclitaxel in another formulation (Taxol) is approved by the Food and Drug Administration for use in patients with cancer. This drug can decrease growth of cancer cells and of new blood vessels. Because patients with psoriasis have an increase in skin cell and blood vessel growth, paclitaxel may also improve their condition. The dose of drug used in this study is much lower than those used to treat cancer patients and is expected to cause relatively few side effects. Patients 18 to 70 years of age with psoriasis lesions affecting at least 20% of their skin may be eligible for this study. Candidates will be screened with a history and physical examination, blood and urine tests, electrocardiogram, and possibly an exercise stress test. Participants will receive six intravenous (through a vein) infusions of paclitaxel over a 6-month period. Each infusion will take about 2 hours. Patients will stay in the clinic for observation for at least 1 hour before going home and will return to the clinic for follow-up examination and tests one week after each infusion. However, on weeks 0 and 8 visit will last for approximately 8 hours and will require a return to the clinic the following morning. Blood collection will be performed during the week 0 and 8 visits to determine how fast Micellar Paclitaxel is eliminated from your body. Approximately 2 teaspoons of blood will be taken prior to the infusion, twice during the infusion, and eight times during the 22 hours following the infusion for a total of eleven samples. These return visits will last approximately 1-2 hours. Patients will have the following procedures: 1. A skin biopsy (removal of a small tissue sample for microscopic examination) will be done at the first visit (week 0) and again at weeks 6, 14 and 22. The area of the biopsy will be numbed with an anesthetic, and a small circle of skin about the width of a pencil eraser and half as deep will be cut and lifted away. Stitches will be placed and removed 1 to 2 weeks later. 2. A history and physical examination will be done at every visit. Patients will be interviewed about changes in their skin condition and about treatment side effects and will be examined by a
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nurse or physician. 3. Blood and urine samples will be collected at frequent intervals (nearly every visit) to test for side effects. 4. Photographs of the skin will be taken at the first visit and at several later visits to document changes in psoriasis. 5. A blood sample will be drawn for genetic testing to look for gene changes in people with psoriasis. 6. An electrocardiogram will be taken at the last visit. This will be done at week 24 and compared to the screening EKG. 7. Gonadal toxicity monitoring will be started with all patients entered into the protocol as of May 2001. Blood will be drawn to measure Inhibit A for females and Inhibit B for males at weeks 0, 6, 14, and 22. Phase(s): Phase II Study Type: Interventional Contact(s): Maryland; National Cancer Institute (NCI), 9000 Rockville Pike Bethesda, Maryland, 20892, United States; Recruiting; Patient Recruitment and Public Liaison Office 1-800-411-1222
[email protected]; TTY 1-866-411-1010 Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00006276;jsessionid=70E1481 55114A228E0D24848C469E326 ·
Study of Psoriatic Arthritis Condition(s): Psoriasis; Psoriatic Arthritis Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Purpose - Excerpt: This study will examine the genetic and immune factors involved in the cause and development of psoriatic arthritis-a disease of both the skin and joints. It will describe the medical features and natural course of the disease and determine participants' eligibility for experimental treatment protocols. Patients with known or suspected psoriatic arthritis 5 years of age and older and their relatives may enroll in this study. Patients will be evaluated with a medical history and physical examination, electrocardiogram, blood tests and X-rays. Additional procedures may include: 1. Leukapheresis-Collection of white blood cells for genetic analysis. Whole blood is collected through a needle placed in an arm vein. The blood circulates through a machine that separates it into its components. The plasma is removed and the cells are returned to the body through a second needle placed in the other arm. 2. Skin biopsy-Removal of a small skin sample for microscopic analysis. An area of skin is numbed with an anesthetic and one to three small circular
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portions (about 1/4 inch in diameter) are cut and removed. 3. Joint aspiration-Removal of a small sample of synovial fluid (lubricating joint fluid). An area of skin around the biopsy site is numbed with an anesthetic, and a needle is inserted into the joint to pull out a small fluid sample. 4. Synovial needle biopsy-Removal of a small sample of synovial tissue (tissue lining the joint). An area of skin around the biopsy site is numbed with an anesthetic and a large needle is inserted into the joint. A smaller needle attached to a syringe is then placed inside the larger needle and small pieces of synovial tissue are removed. 5. Genetic studies-Saliva and blood samples will be collected for gene testing. Saliva is collected by rinsing the mouth with a tablespoon of salt water and spitting into a test tube. Patients will be followed once or twice a year and may be evaluated for participation in an experimental treatment study. Participating relatives of patients will fill out a brief medical history questionnaire and provide a DNA sample (blood sample or tissue swab from the inside of the cheek). Study Type: Observational Contact(s): Maryland; National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), 9000 Rockville Pike Bethesda, Maryland, 20892, United States; Recruiting; Patient Recruitment and Public Liaison Office 1-800-411-1222
[email protected]; TTY 1-866-411-1010 Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00001420;jsessionid=70E1481 55114A228E0D24848C469E326 ·
Treatment of Psoriasis with Parathyroid Hormone Condition(s): Plaque psoriasis Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Purpose - Excerpt: This is a clinical study in two phases. The first phase compares the effect of an ointment containing parathyroid hormone (PTH) with the effect of a placebo ointment (inactive ointment without PTH) on psoriasis lesions. Neither the study participants nor the researchers will know who is receiving PTH ointment and who is receiving placebo until the end of this first study phase. The second phase is a study of the PTH ointment on large areas of psoriasis to find out how long the effects last. Phase(s): Phase I; Phase II Study Type: Interventional
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Contact(s): Sheila Decastro 617-638-8869; Massachusetts; Boston University School of Medicine, Boston, Massachusetts, 01843, United States; Recruiting; Michael Holick, Ph.D., M.D., Principal Investigator. Study chairs or principal investigators: Michael Holick, Ph.D., M.D., Principal Investigator Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00007306;jsessionid=70E1481 55114A228E0D24848C469E326 ·
A Study of Retrovir in the Treatment of Psoriasis in HIV-Positive Patients Condition(s): HIV Infections; Psoriasis Study Status: This study is no longer recruiting patients. Sponsor(s): Glaxo Wellcome Purpose - Excerpt: To evaluate the feasibility of Retrovir (AZT) in the treatment of psoriasis in HIV antibody positive patients. Retrovir has been shown to be effective in the treatment of AIDS. In addition, the administration of AZT appears to have induced a remission of psoriasis in one case study. In light of AZT's antiviral activity and potential effectiveness as an agent for the treatment of psoriasis, this would be the most likely treatment for HIV positive, psoriatic patients whose disease progresses quickly. Study Type: Interventional Contact(s): North Carolina; Glaxo Wellcome Inc, Research Triangle Park, North Carolina, 27709, United States Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00002286;jsessionid=70E1481 55114A228E0D24848C469E326
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Scalp Psoriasis Treatment with a Fiber Optic Comb Condition(s): Psoriasis Study Status: This study is no longer recruiting patients. Sponsor(s): National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Purpose - Excerpt: This study will test the safety and effectiveness of a novel fiber optic device for treating scalp psoriasis with ultraviolet (UVB) light. A effective treatment is not currently available for people with scalp psoriasis. Present methods for treating psoriasis with UV-B light cannot be used for the scalp because hair is usually blocking the light
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from reaching the affected skin. Our method overcomes this problem with the use of a comb that has optical fibers to deliver light directly to the skin. We will evaluate this device in a clinical setting and will use the results to tailor the design of the comb before producing it in large quantities. Phase(s): Phase I; Phase II Study Type: Interventional Contact(s): Zafiris Gourgouliatos 310-575-0188
[email protected]; Massachusetts; Massachusetts General Hospital, Boston, Massachusetts, 02114-2696, United States; Charles Taylor 617-724-3564
[email protected] Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00007293;jsessionid=70E1481 55114A228E0D24848C469E326 ·
Treatment of Psoriasis Using Acitretin in HIV-Positive Patients Condition(s): HIV Infections; Psoriasis Study Status: This study is no longer recruiting patients. Sponsor(s): Hoffmann-La Roche Ltd Purpose - Excerpt: To determine the efficacy of acitretin in the treatment of psoriasis in HIV/AIDS patients. Etretinate, a retinoid, has proven successful in the treatment of HIV-infected patients with psoriasis, but it has an elimination half-life of 100 days. Acitretin, a metabolite of etretinate, has a much shorter half-life of 2 to 3 days. Acitretin has proven effective in treating psoriasis in patients without HIV infection by reducing skin involvement and clearing of the condition, but it has not been thoroughly evaluated in HIV-infected patients. Phase(s): Phase III Study Type: Interventional Contact(s): New York; Beth Israel Med Ctr, New York, New York, 10003, United States Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00002143;jsessionid=70E1481 55114A228E0D24848C469E326
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Research in Skin Inflammation Condition(s): Psoriasis Study Status: This study is completed.
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Sponsor(s): National Cancer Institute (NCI) Purpose - Excerpt: This study will examine the production of proteins called chemokines in inflammatory skin reactions. It is thought that chemokines attract or recruit white blood cells from the blood stream into the skin when there is a skin injury or infection, causing inflammation. This study will examine chemokine production in induced inflammatory reactions to try to gain a better understanding of how white blood cells are attracted to inflamed areas of the body. Healthy normal volunteers between 33 and 60 years old may be eligible for this study if they 1) have no history of chronic skin disease; 2) are not allergic to eggs; and 3) do not tend to form large irregular scars after trauma to the skin from, for example, cuts, scratches and surgical incisions. Candidates will be asked a short series of questions and have a limited skin examination. Participants will have 10 ml (2 tablespoons) of blood drawn from an arm vein at the start and end of the 5-day study and undergo the following procedures: 1. Day 1 - Participants receive an injection in the right upper arm of mumps antigen (a protein commonly used to tests for immunization against mumps) and an injection of "vehicle" (saline plus the preservatives thimerosal, glycine and formaldehyde) in the left upper arm. 2. Day 3 - Participants who develop a swelling from the mumps antigen larger than 5 mm wide will receive another injection of antigen in the right arm and another injection of vehicle in the left arm. Those whose swelling is not greater than 5 mm will be excluded from the study at this point. 3. Day 5 - All four injection sites, plus another site on the left upper arm will be biopsied. For this procedure the five injection areas are numbed with a local anesthetic. A punch biopsy instrument that resembles a small cookie cutter (about one-third the diameter of a dime) is inserted about one-fifth of an inch deep into the skin and the tissue is removed. Two stitches are used to close the wound. Antibiotic and bandages are applied for 5 days. Nine days after the biopsy the participant returns to NIH for removal of the stitches. New molecular biology techniques will be used to measure changes in chemokine production in the biopsied tissue. Study Type: Observational Contact(s): Maryland; National Cancer Institute (NCI), 9000 Rockville Pike Bethesda, Maryland, 20892, United States Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00026741;jsessionid=70E1481 55114A228E0D24848C469E326
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·
Study of Topical Calcitriol in Children With Psoriasis Condition(s): Psoriasis Study Status: This study is completed. Sponsor(s): National Center for Research Resources (NCRR); Boston University School of Medicine Purpose - Excerpt: Objectives: I. Determine the therapeutic efficacy and safety of topical calcitriol in children with psoriasis. Study Type: Interventional Contact(s): Michael F. Holick 617-638-4546. Study chairs or principal investigators: Michael F. Holick, Study Chair; Boston University School of Medicine Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00006275;jsessionid=70E1481 55114A228E0D24848C469E326
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Study of Topical Calcitriol or Oral Calcitriol in Patients with Psoriasis Condition(s): Psoriasis Study Status: This study is suspended. Sponsor(s): National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK); Boston University School of Medicine Purpose - Excerpt: Objectives: I. Evaluate the long term safety and efficacy of orally administered calcitriol in patients with at least 5% of their body covered with psoriasis. II. Evaluate the long term safety and efficacy of topically administered calcitriol in patients with at least 5% of their body covered with psoriasis. III. Compare the topical calcitriol treatment to the oral calcitriol treatment in these patients. Study Type: Interventional Contact(s): Michael F. Holick 617-638-4546. Study chairs or principal investigators: Michael F. Holick, Study Chair; Boston University School of Medicine Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00004468;jsessionid=70E1481 55114A228E0D24848C469E326
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The Evaluation of Oral Acitretin in the Treatment of Psoriasis, Cutaneous Disorders of Keratinization, Multiple Basal Cell Carcinomas and Other Retinoid Responsive Diseases Condition(s): Basal Cell Carcinoma; Keratosis Palmaris et Plantaris; Psoriasis Study Status: This study is completed. Sponsor(s): National Cancer Institute (NCI) Purpose - Excerpt: This is a continuing study which evaluates the longterm safety and efficacy of oral acitretin in an open manner in the treatment of psoriasis, cutaneous disorders of keratinization, multiple basal cell carcinomas and other retinoid responsive diseases. Study Type: Observational Contact(s): Maryland; National Cancer Institute (NCI), 9000 Rockville Pike Bethesda, Maryland, 20892, United States Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00005660;jsessionid=70E1481 55114A228E0D24848C469E326
Benefits and Risks18 What Are the Benefits of Participating in a Clinical Trial? If you are interested in a clinical trial, it is important to realize that your participation can bring many benefits to you and society at large: ·
A new treatment could be more effective than the current treatment for psoriasis. Although only half of the participants in a clinical trial receive the experimental treatment, if the new treatment is proved to be more effective and safer than the current treatment, then those patients who did not receive the new treatment during the clinical trial may be among the first to benefit from it when the study is over.
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If the treatment is effective, then it may improve health or prevent diseases or disorders.
This section has been adapted from ClinicalTrials.gov, a service of the National Institutes of Health: http://www.clinicaltrials.gov/ct/gui/c/a1r/info/whatis?JServSessionIdzone_ct=9jmun6f2 91. 18
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·
Clinical trial patients receive the highest quality of medical care. Experts watch them closely during the study and may continue to follow them after the study is over.
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People who take part in trials contribute to scientific discoveries that may help other people with psoriasis. In cases where certain diseases or disorders run in families, your participation may lead to better care or prevention for your family members. The Informed Consent
Once you agree to take part in a clinical trial, you will be asked to sign an “informed consent.” This document explains a clinical trial's risks and benefits, the researcher’s expectations of you, and your rights as a patient. What Are the Risks? Clinical trials may involve risks as well as benefits. Whether or not a new treatment will work cannot be known ahead of time. There is always a chance that a new treatment may not work better than a standard treatment. There is also the possibility that it may be harmful. The treatment you receive may cause side effects that are serious enough to require medical attention. How Is Patient Safety Protected? Clinical trials can raise fears of the unknown. Understanding the safeguards that protect patients can ease some of these fears. Before a clinical trial begins, researchers must get approval from their hospital's Institutional Review Board (IRB), an advisory group that makes sure a clinical trial is designed to protect patient safety. During a clinical trial, doctors will closely watch you to see if the treatment is working and if you are experiencing any side effects. All the results are carefully recorded and reviewed. In many cases, experts from the Data and Safety Monitoring Committee carefully monitor each clinical trial and can recommend that a study be stopped at any time. You will only be asked to take part in a clinical trial as a volunteer giving informed consent.
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What Are a Patient's Rights in a Clinical Trial? If you are eligible for a clinical trial, you will be given information to help you decide whether or not you want to participate. As a patient, you have the right to: ·
Information on all known risks and benefits of the treatments in the study.
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Know how the researchers plan to carry out the study, for how long, and where.
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Know what is expected of you.
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Know any costs involved for you or your insurance provider.
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Know before any of your medical or personal information is shared with other researchers involved in the clinical trial.
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Talk openly with doctors and ask any questions.
After you join a clinical trial, you have the right to: ·
Leave the study at any time. Participation is strictly voluntary. However, you should not enroll if you do not plan to complete the study.
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Receive any new information about the new treatment.
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Continue to ask questions and get answers.
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Maintain your privacy. Your name will not appear in any reports based on the study.
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Know whether you participated in the treatment group or the control group (once the study has been completed).
What about Costs? In some clinical trials, the research facility pays for treatment costs and other associated expenses. You or your insurance provider may have to pay for costs that are considered standard care. These things may include inpatient hospital care, laboratory and other tests, and medical procedures. You also may need to pay for travel between your home and the clinic. You should find out about costs before committing to participation in the trial. If you have health insurance, find out exactly what it will cover. If you don't have health insurance, or if your insurance company will not cover your costs, talk to the clinic staff about other options for covering the cost of your care.
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What Should You Ask before Deciding to Join a Clinical Trial? Questions you should ask when thinking about joining a clinical trial include the following: ·
What is the purpose of the clinical trial?
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What are the standard treatments for psoriasis? Why do researchers think the new treatment may be better? What is likely to happen to me with or without the new treatment?
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What tests and treatments will I need? Will I need surgery? Medication? Hospitalization?
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How long will the treatment last? How often will I have to come back for follow-up exams?
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What are the treatment's possible benefits to my condition? What are the short- and long-term risks? What are the possible side effects?
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Will the treatment be uncomfortable? Will it make me feel sick? If so, for how long?
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How will my health be monitored?
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Where will I need to go for the clinical trial? How will I get there?
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How much will it cost to be in the study? What costs are covered by the study? How much will my health insurance cover?
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Will I be able to see my own doctor? Who will be in charge of my care?
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Will taking part in the study affect my daily life? Do I have time to participate?
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How do I feel about taking part in a clinical trial? Are there family members or friends who may benefit from my contributions to new medical knowledge?
Keeping Current on Clinical Trials Various government agencies maintain databases on trials. The U.S. National Institutes of Health, through the National Library of Medicine, has developed ClinicalTrials.gov to provide patients, family members, and physicians with current information about clinical research across the broadest number of diseases and conditions. The site was launched in February 2000 and currently contains approximately 5,700 clinical studies in over 59,000 locations worldwide, with
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most studies being conducted in the United States. ClinicalTrials.gov receives about 2 million hits per month and hosts approximately 5,400 visitors daily. To access this database, simply go to their Web site (www.clinicaltrials.gov) and search by “psoriasis” (or synonyms). While ClinicalTrials.gov is the most comprehensive listing of NIH-supported clinical trials available, not all trials are in the database. The database is updated regularly, so clinical trials are continually being added. The following is a list of specialty databases affiliated with the National Institutes of Health that offer additional information on trials: ·
For clinical studies at the Warren Grant Magnuson Clinical Center located in Bethesda, Maryland, visit their Web site: http://clinicalstudies.info.nih.gov/
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For clinical studies conducted at the Bayview Campus in Baltimore, Maryland, visit their Web site: http://www.jhbmc.jhu.edu/studies/index.html
General References The following references describe clinical trials and experimental medical research. They have been selected to ensure that they are likely to be available from your local or online bookseller or university medical library. These references are usually written for healthcare professionals, so you may consider consulting with a librarian or bookseller who might recommend a particular reference. The following includes some of the most readily available references (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): ·
A Guide to Patient Recruitment : Today's Best Practices & Proven Strategies by Diana L. Anderson; Paperback - 350 pages (2001), CenterWatch, Inc.; ISBN: 1930624115; http://www.amazon.com/exec/obidos/ASIN/1930624115/icongroupinterna
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A Step-By-Step Guide to Clinical Trials by Marilyn Mulay, R.N., M.S., OCN; Spiral-bound - 143 pages Spiral edition (2001), Jones & Bartlett Pub; ISBN: 0763715697; http://www.amazon.com/exec/obidos/ASIN/0763715697/icongroupinterna
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The CenterWatch Directory of Drugs in Clinical Trials by CenterWatch; Paperback - 656 pages (2000), CenterWatch, Inc.; ISBN: 0967302935; http://www.amazon.com/exec/obidos/ASIN/0967302935/icongroupinterna
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The Complete Guide to Informed Consent in Clinical Trials by Terry Hartnett (Editor); Paperback - 164 pages (2000), PharmSource Information
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Services, Inc.; ISBN: 0970153309; http://www.amazon.com/exec/obidos/ASIN/0970153309/icongroupinterna ·
Dictionary for Clinical Trials by Simon Day; Paperback - 228 pages (1999), John Wiley & Sons; ISBN: 0471985961; http://www.amazon.com/exec/obidos/ASIN/0471985961/icongroupinterna
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Extending Medicare Reimbursement in Clinical Trials by Institute of Medicine Staff (Editor), et al; Paperback 1st edition (2000), National Academy Press; ISBN: 0309068886; http://www.amazon.com/exec/obidos/ASIN/0309068886/icongroupinterna
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Handbook of Clinical Trials by Marcus Flather (Editor); Paperback (2001), Remedica Pub Ltd; ISBN: 1901346293; http://www.amazon.com/exec/obidos/ASIN/1901346293/icongroupinterna
Vocabulary Builder The following vocabulary builder gives definitions of words used in this chapter that have not been defined in previous chapters: Antibody: An immunoglobulin molecule that has a specific amino acid sequence by virtue of which it interacts only with the antigen that induced its synthesis in cells of the lymphoid series (especially plasma cells), or with antigen closely related to it. Antibodies are classified according to their ode of action as agglutinins, bacteriolysins, haemolysins, opsonins, precipitins, etc. [EU] Antigen: Any substance which is capable, under appropriate conditions, of inducing a specific immune response and of reacting with the products of that response, that is, with specific antibody or specifically sensitized Tlymphocytes, or both. Antigens may be soluble substances, such as toxins and foreign proteins, or particulate, such as bacteria and tissue cells; however, only the portion of the protein or polysaccharide molecule known as the antigenic determinant (q.v.) combines with antibody or a specific receptor on a lymphocyte. Abbreviated Ag. [EU] Antiviral: Destroying viruses or suppressing their replication. [EU] Aspiration: The act of inhaling. [EU] Bandages: Material used for wrapping or binding any part of the body. [NIH] Carcinoma: A malignant new growth made up of epithelial cells tending to infiltrate the surrounding tissues and give rise to metastases. [EU] Cutaneous: Pertaining to the skin; dermal; dermic. [EU] Etretinate:
An oral retinoid used in the treatment of keratotic
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genodermatosis, lichen planus, and psoriasis. Beneficial effects have also been claimed in the prophylaxis of epithelial neoplasia. The compound may be teratogenic. [NIH] Glycine: A non-essential amino acid. It is found primarily in gelatin and silk fibroin and used therapeutically as a nutrient. It is also a fast inhibitory neurotransmitter. [NIH] Gonadal: Pertaining to a gonad. [EU] Immunization: The induction of immunity. [EU] Incision: 1. cleft, cut, gash. 2. an act or action of incising. [EU] Infusion: The therapeutic introduction of a fluid other than blood, as saline solution, solution, into a vein. [EU] Intravenous: Within a vein or veins. [EU] Keratosis: Any horny growth such as a wart or callus. [NIH] Leukapheresis: The preparation of leukocyte concentrates with the return of red cells and leukocyte-poor plasma to the donor. [NIH] Metabolite: process. [EU]
Any substance produced by metabolism or by a metabolic
Molecular: Of, pertaining to, or composed of molecules : a very small mass of matter. [EU] Paclitaxel: Antineoplastic agent isolated from the bark of the Pacific yew tree, Taxus brevifolia. Paclitaxel stabilizes microtubules in their polymerized form and thus mimics the action of the proto-oncogene proteins c-mos. [NIH] Parathyroid: 1. situated beside the thyroid gland. 2. one of the parathyroid glands. 3. a sterile preparation of the water-soluble principle(s) of the parathyroid glands, ad-ministered parenterally as an antihypocalcaemic, especially in the treatment of acute hypoparathyroidism with tetany. [EU] Proteins: Polymers of amino acids linked by peptide bonds. The specific sequence of amino acids determines the shape and function of the protein. [NIH]
Remission: A diminution or abatement of the symptoms of a disease; also the period during which such diminution occurs. [EU] Saline: Salty; of the nature of a salt; containing a salt or salts. [EU] Saliva: The clear, viscous fluid secreted by the salivary glands and mucous glands of the mouth. It contains mucins, water, organic salts, and ptylin. [NIH] Toxicity: The quality of being poisonous, especially the degree of virulence of a toxic microbe or of a poison. [EU]
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PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL
ABOUT PART II In Part II, we introduce you to additional resources and advanced research on psoriasis. All too often, patients who conduct their own research are overwhelmed by the difficulty in finding and organizing information. The purpose of the following chapters is to provide you an organized and structured format to help you find additional information resources on psoriasis. In Part II, as in Part I, our objective is not to interpret the latest advances on psoriasis or render an opinion. Rather, our goal is to give you access to original research and to increase your awareness of sources you may not have already considered. In this way, you will come across the advanced materials often referred to in pamphlets, books, or other general works. Once again, some of this material is technical in nature, so consultation with a professional familiar with psoriasis is suggested.
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CHAPTER 4. STUDIES ON PSORIASIS Overview Every year, academic studies are published on psoriasis or related conditions. Broadly speaking, there are two types of studies. The first are peer reviewed. Generally, the content of these studies has been reviewed by scientists or physicians. Peer-reviewed studies are typically published in scientific journals and are usually available at medical libraries. The second type of studies is non-peer reviewed. These works include summary articles that do not use or report scientific results. These often appear in the popular press, newsletters, or similar periodicals. In this chapter, we will show you how to locate peer-reviewed references and studies on psoriasis. We will begin by discussing research that has been summarized and is free to view by the public via the Internet. We then show you how to generate a bibliography on psoriasis and teach you how to keep current on new studies as they are published or undertaken by the scientific community.
The Combined Health Information Database The Combined Health Information Database summarizes studies across numerous federal agencies. To limit your investigation to research studies and psoriasis, you will need to use the advanced search options. First, go to http://chid.nih.gov/index.html. From there, select the “Detailed Search” option (or go directly to that page with the following hyperlink: http://chid.nih.gov/detail/detail.html). The trick in extracting studies is found in the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer, and the
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format option “Journal Article.” At the top of the search form, select the number of records you would like to see (we recommend 100) and check the box to display “whole records.” We recommend that you type in “psoriasis” (or synonyms) into the “For these words:” box. Consider using the option “anywhere in record” to make your search as broad as possible. If you want to limit the search to only a particular field, such as the title of the journal, then select this option in the “Search in these fields” drop box. The following is a sample of what you can expect from this type of search: ·
Skin Manifestations Related to HIV Source: STEP Perspective; Vol. 4, No. 2. Contact: Seattle Treatment Education Project, 1123 E John St, Seattle, WA, 98102, (206) 329-4857, http://www.thebody.com/step/steppage.html. Summary: Afflictions of the skin are a serious concern for HIV-infected people. This article discusses the most commonly seen skin conditions and ways to treat them. These include seborrheic dermatitis, a dandrufflike skin condition affecting the scalp, face, chest, back, groin, and armpits. Individuals who have recurrent episodes of seborrheic dermatitis may benefit from using dandruff shampoo as a body wash. Psoriasis often occurs after HIV infection. The initial lesions often begin like seborrheic dermatitis but spread to the armpits, groin, elbows, knees, and lower back. Significant improvement is often seen after using AZT at higher doses and from phototherapy. Herpes simplex virus is a common infection among people with HIV. Because the herpes virus contributes to immune suppression, many physicians prescribe oral acyclovir as a prophylaxis. Herpes zoster, or shingles, is common in people with HIV. Acyclovir is used in an intravenous form to treat the shingles, as are topical creams. Molluscum contagiosum is a viral infection producing lesions that can appear anywhere on the body. Treatment includes topical ointments, AZT, and retinoic acid. Human Papillomavirus (HPV) causes warts that are treated with cryotherapy, electrocautery, excision, or injections of alpha interferon. Xeroderma is a dry skin condition treated with oil and lotions. Folliculitis can be found around hair follicles and responds well to ketoconazole treatment. Bacillary angiomatosis appears as papules or nodules and often resembles Kaposi's sarcoma. Treatment includes a 3- to 4-week regimen of antibiotic. A review of photodermatitis, insect bite reactions, drug reactions, nail disorders, and hair changes conclude the article.
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Superficial Fungal Infection of the Skin: Where and How It Appears Help Determine Therapy Source: Postgraduate Medicine. 109(1): 117-120,123-126,131-132. January 2001. Summary: This journal article provides health professionals with information on the features, diagnosis, and management of tinea pedis, tinea corporis, tinea cruris, tinea versicolor, tinea capitis, tinea faciei, tinea manuum, cutaneous candidiasis, and onychomycosis. Tinea pedis, the most common fungal infection of the skin, involves the plantar surface and interdigital spaces of the foot and can include inflammatory and noninflammatory lesions. Differential diagnosis of tinea pedis includes acrodermatitis continua, candidiasis, contact dermatitis, eczema, erythrasma, psoriasis, pustular bacterids, pyoderma, and secondary syphilis. Tinea pedis usually responds to topical agents such as econazole nitrate, ketoconazole, and terbinafine hydrochloride. Tinea corporis, commonly referred to as ringworm of the body, is dermatophytosis of the glabrous skin of the trunk and extremities. This condition typically develops after inappropriate topical corticosteroid therapy. Treatment involves topical therapy. Tinea cruris, or jock itch, is a dermatophytosis of the proximal medial thigh and buttock. Differential diagnosis includes mechanical intertrigo and candidiasis. Treatment involves topical therapy. Tinea versicolor, or pityriasis versicolor, is typically found in regions of the body that have sebaceous glands. The characteristic finding is skin depigmentation. Differential diagnosis includes vitiligo, tinea corporis, pityriasis rosea, pityriasis alba, and secondary syphilis. Topical therapies such as terbinafine, econazole, ketoconazole, and selenium sulfide lotion or shampoo are effective topical therapies. Tinea capitis, which is a dermatophytic infection of the head and scalp, can have a range of clinical presentations. Differential diagnosis includes seborrheic dermatitis, dandruff, scalp psoriasis, atopic dermatitis, and alopecia areata. An oral agent such as griseofulvin is usually needed to successfully treat this condition. Tinea faciei is dermatophytosis of the nonbearded areas of the face. This infection responds to topical therapy. Tinea manuum, an unusual dermatophytic infection of the interdigital and palmar surfaces, may coexist with other fungal infections. Differential diagnosis includes pompholyx, eczema, secondary syphilis, and callus formation. Although the condition responds to topical therapy, it may recur if untreated onychomycosis is present. Cutaneous candidiasis, a skin infection caused by Candida albicans and other species, often presents with erythema, cracking, or maceration. Topical agents commonly used to treat this condition include nystatin, ketoconazole, miconazole nitrate, and clotrimazole. Onychomycosis, a
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fungal infection of the nail unit, has a wide variety of clinical presentations. Differential diagnosis includes psoriasis, lichen planus, alopecia areata, subungual tumors and warts, and bacterial infections. Oral agents are more successful than topical agents. The article also discusses the topical and systemic agents used to treat cutaneous fungal infections. Topical agents include imidazoles, allylamines, and polyenes. Systemic agents include griseofulvin, ketoconazole, itraconazole, terbinafine, and fluconazole. 16 figures, 2 tables, and 21 references. ·
Treatment of Psoriasis: An Algorithm-Based Approach for Primary Care Physicians Source: American Family Physician. 61(3): 725-733. February 1, 2000. Contact: American Academy of Family Physicians. 11400 Tomahawk Creek Parkway, Leawood, KS 66211-2672. (800) 274-2237 or (913) 9066000. E-mail:
[email protected]. Website: www.aafp.org. Summary: This journal article provides health professionals with information on the diagnosis and treatment of psoriasis. Although the primary cause of psoriasis remains unknown, abnormal epidermal cell kinetics and abnormal activation of immune mechanisms are thought to be the major contributors. Psoriasis is characterized by red, thickened plaques with a silvery scale. The lesions vary in size and degree of inflammation. Psoriasis is categorized as localized or generalized, based on the severity of the disease and its overall impact on the patient's quality of life and well being. The diagnosis of psoriasis can usually be made on the basis of the clinical presentation. If the diagnosis is uncertain, a biopsy can be performed or consultation with a dermatologist can be obtained. Once the diagnosis of psoriasis is made, patient education about the disease should begin. Points that should be emphasized about the disease initially include its noncontagious nature, the possibility of controlling but not curing it, and the factors that exacerbate the disease. In all cases, the therapeutic goal is to maximize treatment efficacy and the patient's quality of life while minimizing side effects. Topical therapy, including corticosteroids, calcipotriene, coal tar products, tazarotene, and anthralin, is the mainstay of treatment for localized disease. Psoriatic plaques that fail to respond to topical therapy may be improved by administration of intralesional corticosteroid injections. The patient who has refractory lesions may benefit from more advanced forms of treatment such as ultraviolet B alone or psoralens plus ultraviolet A; outpatient treatment at a clinic specializing in psoriasis; and systemic therapy with oral retinoids, methotrexate, or cyclosporine. Both physicians and patients need to understand that there is no
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definitive cure for psoriasis. 4 figures, 4 tables, and 17 references. (AAM). ·
Questions About Psoriasis Source: American Family Physician. 61(3): 736. February 1, 2000. Contact: American Academy of Family Physicians. 11400 Tomahawk Creek Parkway, Leawood, KS 66211-2672. (800) 274-2237 or (913) 9066000. E-mail:
[email protected]. Website: www.aafp.org. Summary: This journal article uses a question and answer format to provide people who have psoriasis with information on the causes and treatment of this disease. Psoriasis is a very common noncontagious skin disorder that causes large, thick, scaly red or purple patches on the skin. The exact cause of psoriasis is unknown. Anyone can get psoriasis, and the disease sometimes runs in families. Although there is no cure for psoriasis, it can be controlled with proper treatment. Options for treating psoriasis include keeping skin moisturized; using prescription creams, ointments, and lotions; taking oral medications; and undergoing ultraviolet light therapy. Exacerbating factors include stress, infections, and certain medications. The article includes sources of additional information about psoriasis.
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Help for Psoriasis Source: American Family Physician. 59(4): 964. February 1999. Contact: American Academy of Family Physicians. 11400 Tomahawk Creek Parkway, Leawood, KS 66211-2672. (800) 274-2237 or (913) 9066000. E-mail:
[email protected]. Website: www.aafp.org. Summary: This journal article uses a question and answer format to provide people who have psoriasis with information on this skin condition, which causes red, silvery scales and flaky patches. The cause is unknown, and there is no cure. Although diagnosis is usually based on visual inspection of the skin, a biopsy may be needed in some cases. Mild psoriasis may not need any treatment or may be treated with materials available without a prescription, such as moisturizing creams and shampoos, ointments with salicylic acid, and preparations that contain coal tar. Prescription creams containing steroids are used for more severe cases. Other treatment options include phototherapy; light plus psoralen therapy; and drugs such as methotrexate, etretinate, acitretin, calcipotriene, and tazarotene.
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Topical Psoriasis Therapy Source: American Family Physician. 59(4): 957-962. February 1999.
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Contact: American Academy of Family Physicians. 11400 Tomahawk Creek Parkway, Leawood, KS 66211-2672. (800) 274-2237 or (913) 9066000. E-mail:
[email protected]. Website: www.aafp.org. Summary: This journal article provides health professionals with information on the efficacy and limitations of topical therapies used to treat psoriasis. Until recently, the mainstays of topical therapy have been corticosteroids, tars, anthralins, and keratolytics. Recently, however, vitamin D analogs, a new anthralin preparation, and topical retinoids have expanded the therapeutic armamentarium of physicians. Corticosteroids have anti-inflammatory, immunosuppressive, and antiproliferative properties. In general, mid-potency corticosteroids are used for lesions on the torso and extremities; low-potency corticosteroids are used for areas such as the face, genitals, or flexures; and high-potency corticosteroids are usually reserved for recalcitrant plaques or lesions on the palms of the hands and soles of the feet. Drawbacks of corticosteroid therapy include tachyphylaxis, skin atrophy, and adrenal suppression. Keratolytic agents help remove scales or hyperkeratosis. Salicylic acid is a commonly used keratolytic agent. Anthralin, which is available in ointment, cream, and paste forms, has been demonstrated to inhibit cell growth and restore cell differentiation. It is usually applied once daily at night and can be very irritating to normal skin. Coal tar appears to have antiproliferative and anti-inflammatory actions. However, it can cause contact allergy, and its use is limited by its inconvenience. Calcipotriene, a vitamin D analog, is generally well tolerated when applied twice daily. Like corticosteroids, calcipotriene can be considered a first-line agent and is available as an ointment, cream, or solution. Retinoids mediate cell differentiation and proliferation. Oral retinoids have many adverse systemic effects, so topical retinoids were developed to avoid many of them. Tazarotene, a topical retinoid, is rapidly metabolized in the skin and converted to tazarotenic acid. Local skin irritation and pruritis are frequent side effects. In addition, tazarotene may be teratogenic. 3 figures, 2 tables, and 26 references. (AA-M). ·
Tazarotene, a Receptor-Selective Topical Retinoid, in the Treatment of Psoriasis Source: Journal of New Developments in Clinical Medicine. 17(2): 133145. 2nd Quarter 1999. Summary: This journal article provides health professionals with information on the use of tazarotene, a receptor-selective topical retinoid, in the treatment of psoriasis. Tazarotene is an acetylenic retinoid and prodrug of tazarotenic acid. A thin layer of tazarotene gel should be applied once daily in the evening to dry psoriatic plaques. Tazarotene
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normalizes keratinocyte differentiation, reverses keratinocyte hyperproliferation, and suppresses inflammation in treated plaques. Various studies have evaluated the effectiveness and safety of this agent, which has been shown to induce remission of psoriasis following the cessation of therapy. Although the drug is effective and well-tolerated as monotherapy, its efficacy can be further enhanced when it is used in combination with mid- or high-potency corticosteroids or ultraviolet B phototherapy. The combination of tazarotene and a mid-potency corticosteroid appears to be more efficacious than twice-daily dose of calcipotriene. Tazarotenic acid, the metabolite of tazarotene, has a short elimination half-life of 1 to 2 hours and does not accumulate in tissues. Very low plasma levels of tazarotene and its active metabolite have been detected, but treatment-related systemic adverse events have not been reported during clinical trials. Adverse effects, consisting primarily of dose-related local cutaneous itching, burning, erythema, and irritation, can be minimized with concurrent use of lubricants or medium- or highpotency corticosteroids. 1 table and 40 references. (Sum-M). ·
Skin Problems of Musicians Source: International Journal of Dermatology. 38(3): 192-195. March 1999. Summary: This journal article provides health professionals with information on a study that investigated the skin problems of high level musicians in a professional orchestra. A health questionnaire was administered to 97 orchestra players and 20 singers. The questionnaire asked about any skin changes directly related to their instruments. Past and current skin problems were also investigated. Twelve musicians who reported dermatitis associated with the playing of their instruments were patch tested. The study found that the most common skin problems were seen in violin players. Typically, the clinical lesion was a localized area of lichenification on the left side of the neck just below the angle of the jaw. Hyperpigmentation, erythema, inflammatory papules, localized alopecia, and pustules were present in different cases. Positive patch test reactions to nickel were found in two violin players, and one other violinist was allergic to colophony. Other skin problems found among the musicians included hyperhidrosis, cheilitis, and calluses of the fingertips. Among the group of singers, the dermatologic findings were mostly stress related. Problems included lichen planus, psoriasis, seborrheic dermatitis, and urticaria. The article concludes that musicians are at risk from occupationally related dermatoses. These data will be useful for the evaluation of musicians with similar difficulties. 3 figures, 1 table, and 10 references. (AA-M).
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Koebner Phenomenon in Psoriasis Source: Postgraduate Medicine. 106(3): 39-40. September 1999. Summary: This journal article provides health professionals with information on the Koebner phenomenon in psoriasis. This phenomenon, which was first noted by Henrich Koebner in 1872, describes the appearance of new psoriatic lesions on otherwise normal skin in response to trauma. The phenomenon can be elicited by bites, burns, tattoos, lacerations, pressure, scratches, incisions, surgical scars, furuncles, vaccinations, sunburn, and radiation. Patients who have psoriasis should be cautioned to avoid preventable injury to the skin. The article presents the case of a 17 year old girl with a history of psoriasis since early childhood who experienced exacerbated disease on her elbows and knees and on her right lateral ankle at the site of a tattoo that had been applied a few months earlier. Following 1 month of treatment, her psoriasis improved 75 percent, but some disease activity remained on the extensor surfaces and the tattooed area. In this patient, the Koebner phenomenon that occurred in the recently tattooed area was identical in appearance to other lesions and was similarly resistant to certain treatments. 1 figure and 10 references.
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Corticosteroid-Induced Flare of Psoriasis: How to Control, Better Yet, Avoid Source: Postgraduate Medicine. 106(7): 31-32. December 1999. Summary: This journal article uses a case report to provide health professionals with information on corticosteroid induced flares of psoriasis. A 55 year old man who had a 25 year history of psoriasis experienced a generalized flare of the disease. Prior to the flare, the man had an exacerbation of asthma that was treated with systemic corticosteroids and prednisone. The prednisone dosage was started at 60 milligrams per day and tapered over 3 weeks. The man experienced a dramatic psoriasis flare during tapering. He was treated with the retinoid etretinate, emollients, and triamcinolone 0.1 percent cream. After 8 weeks, the psoriasis cleared completely, and clearance was maintained for a 6 month period using topical corticosteroids and low dose acitretin. Many genetic, environmental, and local factors can influence the pathogenesis of psoriasis. For example, as in this man's case, cessation of oral corticosteroids can trigger a severe flare or even cause progression to generalized pustular psoriasis. 2 figures and 8 references.
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Juvenile Psoriasis: Early Interventions Can Reduce Risks for Problems Later Source: Postgraduate Medicine. 103(4): 89-92, 95-96, 99-100. April 1998. Summary: This journal article for health professionals presents an overview of juvenile psoriasis. This skin disease is characterized by epidermal hyperplasia and greatly accelerated epidermal turnover. Lesions are usually discrete, erythematous papules and plaques covered with silvery scales. Lesions tend to be symmetric. Genetic, systemic, and environmental factors influence the course of psoriasis. Environmental factors, such as cutaneous trauma, drugs, low humidity, or stress, seem to be the most important in the course of juvenile psoriasis. It occurs in both sexes with nearly equal frequency. Estimates of total prevalence throughout the world range from 0.1 percent to 3 percent. Although the mean age at onset is 27.8 years, many patients were diagnosed before age 20. The guttate form of psoriasis is probably the most common in children. Many methods are available to treat psoriasis, including exposing the skin to sunlight and using topical preparations such as emollients and moisturizers, tar preparations, anthralin preparations, topical corticosteroid therapy, and vitamin D3 ointment. Systemic methods include cytotoxic antimetabolite drugs, photochemotherapy, and retinoids. However, these drugs are not safe for long-term use by infants and children. In addition, patient education is an important aspect of disease management. A total-care approach is the optimal way of managing the disease. 6 figures, 3 tables, and 20 references.
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Adult Skin Disease in the Pediatric Patient Source: Dermatologic Clinics. 16(3): 593-608. July 1998. Summary: This journal article provides health professionals with information on the epidemiology, clinical features, differential diagnosis, and treatment of various adult skin diseases in children. Diseases discussed include psoriasis, lichen planus, Sweet's syndrome, rosacea, and mycosis fungoides (MF). In addition, the article highlights the distinctive features of lichen sclerosus and immunobullous diseases in childhood. Psoriasis is characterized by erythematous papules or plaques with silvery white scales. The clinical features of skin lesions of psoriasis in children are identical to those in adults. Plaque type psoriasis is the most common form seen is children, and guttate psoriasis is also common. Pustular psoriasis is uncommon in both adults and children, and psoriatic erythroderma is very rare in children. Treatment options include topical medications such as emollients, corticosteroids, coal tar, anthralin, calcipotriol, and tazarotene; ultraviolet light; and systemic agents such as methotrexate and systemic retinoids. Lichen planus is an
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uncommon skin and mucous membrane disease in both adults and children. The main features of this disease are small, violaceous, flattopped polygonal papules that are usually intensely itchy. Mucosal involvement is very rare in children under 16 years. Oral antihistamines and topical corticosteroids are the main treatment options. Rosacea is a chronic facial eruption that is rare in children. The clinical presentation of rosacea in children is similar to that seen adults, with a vascular and inflammatory component. Therapy includes topical metronidazole gel and systemic antibiotics. Sweet's syndrome, which is usually seen in women between the ages of 30 and 50 years, is rare in the pediatric age group. This syndrome is associated with fever. The skin lesions are bright red tender plaques and nodules. Treatment involves systemic glucocorticoid therapy. MF can present in childhood but is more common in adults over age 50. The morphology of the skin lesions of MF in childhood resembles that seen in adults with similar stages of MF. Treatment depends on the stage, and alternatives include photochemotherapy, topical steroids, and topical chemotherapy. 8 figures, 3 tables, and 140 references. ·
Pruritic Skin Diseases in the Elderly Source: Journal of Dermatology. 25(3): 153-157. March 1998. Summary: This journal article provides health professionals with information on a retrospective study that gathered clinically relevant data on both pruritic skin diseases and etiologic factors in the elderly patient. A total of 149 elderly men and women with pruritic skin problems were selected for study at a dermatologic clinic in a hospital in Bangkok, Thailand, from November 1996 to January 1997. There were 62 men and 87 women enrolled in the study. Among these elderly patients, pruritic skin disease was the most common problem, found in about 41 percent of participants. Xerosis was the most common problem. Inflammatory eczema and lichen simplex chronicus were the second and third most common problems. Other pruritic skin diseases were skin infections, psoriasis vulgaris, urticaria, drug rash, insect bite, and anogenital pruritus. Xerosis usually occurred with increased bathing frequency and strong soaps and detergents. The causes of inflammatory eczema were seborrheic dermatitis, allergic contact dermatitis, dyshidrosis, and stasis dermatitis. Statistical analysis of xerosis and inflammatory eczema by sex showed no difference, but there was more inflammatory eczema among women. 5 tables and 22 references. (AA-M).
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Psoriasis: New Clues to Causation, New Ways To Treat Source: Patient Care. 33(9): 154-158,161-164. May 15, 1999.
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Summary: This journal article provides health professionals with information on the cause and treatment of psoriasis. This chronic, fluctuating, inflammatory skin condition ranges from mild to severe. The features of plaque psoriasis include circumscribed areas of thickening, redness, and overlying silvery scaling. Diagnosis is based on clinical examination. Patients who have mild, circumscribed psoriasis may be able to manage their symptoms with simple topical remedies. People who have more extensive skin involvement are likely to benefit from referral to a dermatologist or psoriasis specialty center. Medications available to treat psoriasis include traditional agents such as coal tar and anthralin preparations and topical corticosteroids, as well as newer agents such as the vitamin D derivative calcipotriene and the receptorselective retinoid tazarotene. In addition, new topical options are in development or undergoing evaluation. Phototherapy with ultraviolet B (UVB) light remains the most widely used form of phototherapy. Trials of narrow-band UVB, which is expected to provide a significant advance, are under way. Photochemotherapy, which uses ultraviolet A light in combination with the photosensitizing agent and a psoralen compound, has been used successfully for more than 20 years. The main long-term concern of phototherapy is the development of squamous cell carcinoma and melanoma. Various systemic medications may be used to treat patients whose psoriasis does not respond to topical treatment or phototherapy. Systemic agents include methotrexate, oral retinoids, and cyclosporine. Many dermatologists try various different rotational programs to reduce the adverse effects and pharmacologic limitations associated with various agents and approaches. A long-term plan for disease management can also be helpful for patients. 8 figures and 13 references. ·
New Topicals for Mild and Moderate Psoriasis Source: JAAPA: Official Journal of the American Academy of Physician Assistants. 12(4): 52-54,57-58,60. April 1999. Summary: This journal article provides health professionals with information on new topical agents for treating mild to moderate psoriasis. Although the cause of psoriasis is not clear, it is commonly accepted that a genetic predisposition combined with a triggering event such as skin trauma, psychologic stress, streptococcal infections, alcohol abuse, or ingestion of certain medications may initiate the process. Topical corticosteroids have been the mainstay of treatment because of their effectiveness, ease of use, and low cost. However, side effects limit their usefulness. Coal tar ointments and shampoos and anthralin also have unpleasant side effects. The limitations of these agents have led to
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the search for agents that can effectively relieve symptoms while avoiding the side effects and inconvenience of using them. The Food and Drug Administration approved the vitamin D analog calcipotriene and the vitamin A product tazarotene for topical treatment of psoriasis. Calcipotriene inhibits T lymphocyte proliferation. At 0.005 percent, calcipotriene is appropriate as a first or second line agent in moderate psoriasis. The drug has the efficacy of a medium potency topical corticosteroid. The ointment or cream is applied sparingly to the affected area twice a day for at least 2 to 6 weeks. Treatment may be continued for as long as 1 year. Side effects include hypercalciuria, hypercalcemia, and nephrolithiasis. The drug should not be used on the face or groin because of the risk of irritation. Tazarotene, a newly developed topical retinoid, targets retinoic acid receptors in the skin. The drug, which can be used for plaque psoriasis covering less than 20 percent of the body's surface area is applied in the evening. Several studies have demonstrated tazarotene's efficacy, which may be improved by combining it with a medium or high potency corticosteroid such as fluocinonide. The article provides guidelines on incorporating these new agents into patient care management. 1 table and 19 references.
Federally-Funded Research on Psoriasis The U.S. Government supports a variety of research studies relating to psoriasis and associated conditions. These studies are tracked by the Office of Extramural Research at the National Institutes of Health.19 CRISP (Computerized Retrieval of Information on Scientific Projects) is a searchable database of federally-funded biomedical research projects conducted at universities, hospitals, and other institutions. Visit the CRISP Web site at http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket. You can perform targeted searches by various criteria including geography, date, as well as topics related to psoriasis and related conditions. For most of the studies, the agencies reporting into CRISP provide summaries or abstracts. As opposed to clinical trial research using patients, many federally-funded studies use animals or simulated models to explore psoriasis and related conditions. In some cases, therefore, it may be difficult 19 Healthcare projects are funded by the National Institutes of Health (NIH), Substance Abuse and Mental Health Services (SAMHSA), Health Resources and Services Administration (HRSA), Food and Drug Administration (FDA), Centers for Disease Control and Prevention (CDCP), Agency for Healthcare Research and Quality (AHRQ), and Office of Assistant Secretary of Health (OASH).
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to understand how some basic or fundamental research could eventually translate into medical practice. The following sample is typical of the type of information found when searching the CRISP database for psoriasis: ·
Project Title: Five Dose Trial of ABX Il8 in Treatment of Severe Plaque Psoriasis Principal Investigator & Institution: Krueger, Gerald G.; University of Utah 200 S University St Salt Lake City, Ut 84112 Timing: Fiscal Year 2001 Summary: ABX-IL-8 is a humanized monoclonal antibody generated in transgenic mice. The antibody has a high affinity for IL-8, and can neutralize IL-8, as demonstrated in several assay systems. The antibody inhibits binding to neutrophils, inhibits IL-8-induced calcium flux, and inhibits MAC-1 expression, elastase release, and chemotaxis. Dr. Krueger did the developmental work for this protocol by demonstrating in an experimental system that unaffected skin from patients with psoriasis, grafted onto nude mice, generated psoriasis-like lesions when IL-8 was injected. This effect was totally blocked by administering ABX-IL-8. These animal data suggest that an antibody against IL-8 might be an effective method of treating plaque-phase psoriasis. From the study done on the GCRC, safety of the drug was determined, and then appropriate dosing ranges established. The drug proved remarkably effective in the treatment of plaque-phase psoriasis, and a manuscript describing the beneficial effects of this therapy is now in preparation. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket
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Project Title: genetic analysis of psoriasis Principal Investigator & Institution: Bowcock, Anne M.; Professor; Genetics; Washington University Lindell and Skinker Blvd St. Louis, Mo 63130 Timing: Fiscal Year 2000; Project Start 1-JAN-1998; Project End 0-NOV2001 Summary: (Adapted from the applicant's abstract) - Psoriasis is a complex disease that affects approximately 2% of the population. It results in abnormal proliferation of immature keratinocytes and recruitment of T cells to the dermis and epidermis. This results in three major features: induration, scaling, and erythema. A variety of novel proteins have been identified in psoriatic skin that include proinflammatory cytokines, adhesion molecules, HLA-DR, keratins, and alteration in the cellular distribution of integrins. The mode of inheritance of psoriasis is complex, although a familial component is now accepted as
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a result of twin studies, sib pair studies, the identification of large numbers of multiply affected families, and more recently, by evidence for linkage to particular chromosomal regions in some families. The applicants previously provided strong evidence for linkage to the distal end of chromosome 17q. HOMOG estimates indicated that the disease is genetically heterogeneous. A second study recently showed evidence for linkage of psoriasis to chromosome 4 (near D4S1535) in five families from Ireland. In both of these studies, psoriasis susceptibility behaves as an autosomal dominant trait with high penetrance. There is also an autoimmune component to psoriasis, and Cw6 carriers are at 15-fold higher risk of disease. The applicants now propose to localize additional genes conferring susceptibility to psoriasis by performing a genome-wide linkage screen on 250 sib pairs and 27 multiply affected families. Markers will be selected at 3 cM intervals, and genotyping will be performed using an ABI 377. This will require the generation of 1,300,000 genotypes over 3 years (approximately 450,000 per year). Susceptibility loci will be identified by parametric and nonparametric means with GENEHUNTER. Regions where p
