May 2017

From the Editor… During the Summer of 2014, an effort was made to encourage the worldwide PRP community to participate in a PRP research effort under the auspices of the Department of Dermatology and Cutaneous Biology at Thomas Jefferson University. The following members of the PRP Facebook Support Group offered words of encouragement. The effort […]

06.01.12 Jean-Luc Deslauriers Memorial Research Award Since pityriasis rubra pilaris was first described in 1883, there has been a dearth of research to improve diagnosis and treatment. Why? Patient pool too small With a prevalence rate of one in 400,000, there has never been an easy-to-access pool of PRPers available to participate in PRP-related research.

From the Editor… The following article from The Jerusalem Post is frequently referenced by PRP patients and caregivers. It was written by Judy Siegel-Itzkovich and published on June 17, 2012. Please note that the gene CARD14 is not the cause of pityriasis rubra pilaris, but rather the “genetic basis” for our disease. Dr. Jouni Uitto,

From the Editor… To our knowledge, no clinical trials are currently underway regarding pityriasis rubra pilaris and any pharmaceutical in the pipeline. However, there is ongoing clinical and genetic research at Thomas Jefferson UnIversity. We need to foster more research. Perhaps the PRP community could ask PRP-savvy dermatologists to consider independent, case studies regarding the

Editor’s Note: The Genetic and Rare Disease Information Center offers the following tutorial. If you follow all the links and search for research related to pityriasis rubra pilaris, you will find no current research. Reports about clinical research study results are often in the news, but it can be difficult to find out about studies

06.01.06 In search of PRP Patients There are an estimated 800 Americans with PRP. Unfortunately, we have only been able to identify 188 (23.5%) who are currently “active”. This is simply unacceptable. While the number of patients served by dermatology patient organizations for psoriasis and eczema is measured in the millions, we measure the PRP

06.01.05 Finding “Active” PRP Patients by Bill McCue, PRP Patient Advocate Nicola Galt and I attended the Coalition of Skin Diseases Annual Luncheon at the Marriott Marquis in San Francisco on Saturday, March 21, 2015. Dr.Mark Lebwohl, incoming president of the American Academy of Dermatology, spoke briefly and pledged to have an open door for

06.01.04 Patient registry? Source: EveryLife Foundation, Community Congress, Webinar, Sanford Research Clinical Development for Rare Diseases: A Primer for Rare Disease Patients and Advocates March 29, 2017 “¢ A registry is a collection of information about individuals, usually focused around a specific diagnosis or condition. – NIH “¢ Contact registries collect basic emographic and contact

06.01.03 Finding research In Search of PRP Research [ INSERT 500 Image ] The truth be told, we really have no way of knowing what PRP-related research is currently underway or in the pipeline. That said, we do plan to find out. We start the search for PRP research with the nation’s 555 teaching hospitals

06.01.02 Advocating PRP Research As published in On the Road… (April 1, 2014, page 3) by Bill McCue In Search of Answers From the outset, the 2014 PRP Worldwide Census was designed to answer four questions to satisfy my own curiosity: 1.What are the variations in onset age? I was 66. 2.What are the variations