From the Editor… On July 25, 2017, I received a message from Dr. Nick Ross at Thomas Jefferson University. He reminded me that I had not sent in my blood samples for the ongoing PRP Research Study. I was mortified. Nah. Actually, at 71, very little mortifies me. At best I was embarrassed that yet another […]
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From the Editor… With one notable exception, the status of PRP research is a source of concern among the PRP patient population. A search of ClinicalTrials.gov, for example, retrieves only one entry. A pilot study to determine the efficacy of a biologic medication was started at Icahn School of Medicine at Mount Sinai in New York. They registered
RDB — Investigative Therapies Read More »
From the Editor… I recently stumbled upon an article that was published in JAMA Dermatology in January 2014: “Treatment Options for Pityriasis Rubra Pilaris Including Biologic Agents — A Retrospective Analysis From an Academic Medical Center”. What I found most interesting about this research was that I could actually understand what they were presenting. It may also provide insights
PRP Research — Treatment Options Read More »
From the Editor… PPR research is an ongoing effort. The PRP Survival Guide will attempt to provide updates to the worldwide PRP community. Wednesday, July 5, 2017 Thomas Jefferson University is accepting blood samples for PRP-related research. Thomas Jefferson University is at a point in their PRP research where they need blood samples from the
PRP Research Update Read More »
From the Editor… As a rule, PRP patients and caregivers are given the proper spelling of pityriasis rubra pillars, the acronym “PRP” and a referral to Dr. Internet. Some of us reach out to Dr. Yahoo. Others seek out Dr. Google. It doesn’t take long for us to learn that using PRP doesn’t work. Enter “PRP” and the
Asking Dr. Google? Read More »
From the Editor… Cami B (Pine City, MN) is participating in ongoing PRP research at Thomas Jefferson University. Misdiagnosed She received an email on June 13, 2017 requesting blood samples. from TJU researchers. The following day she went to the lab where the blood samples were taken. It was then off to the Post Office.
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From the Editor… Prior to November 2013, there was no concerted effort by healthcare professionals or PRP patients to gather information about the PRP community. The first PRP Global Census was based on a mailing list extracted from over 29,000 emails archived by the PRP Support Group founded in 1997. As a member/subscriber to the PRP-L List, I was authorized
How do we track the Global PRP Community? Read More »
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
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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.
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