Bill McCue

06.01.13 What is a cohort?

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