From the Editors: The PRP Community had long lamented the lack of PRP research until Thomas Jefferson University began genetic research in 2012. Three years later TJU initiated a clinical research ieffort that continues today. Recently Yale University has committed to genetic research, a PRP patient registry, and a Burden of Skin Disease study. Why …
From the Editors: During the summer of 2013, a total of 487 PRP patients were polled by email and given an opportunity to participate in a first-of-its-kind PRP Biopsy Poll. Remarkably, within a 3-week period, a total of 256 invitees (52.6%) shared their biopsy experiences and/or recollections.The primary objective of the PRP Biopsy Poll was to better understand …
From the Editors: Most PRP patients and caregivers are given very little guidance after their PRP diagnosis is rendered. Referrals to Dr. Google and Dr. Yahoo are quite standard, Balderdash! The PRP Alliance has self-financed an outreach effort to 87 of the dermatology departments of our nation’s teaching hospitals advocating a standard referral to …
From the Editors: The PRP Community Database currently tracks 1,622 PRP patients who are now members of the PRP Facebook and/or RareConnect Communities, or are unaligned but have a valid email address. The 2017 PRP Worldwide Census begins today with a simple goal: confirm the data we have and add data we are missing. …
Thank you for sharing your information. Bill McCue, Founder/President PRP Alliance, Inc.
Let’s start with a little history. When James Shooter was admitted to St. Bartholomew’s Hospital in London, England in 1828, he unwittingly became the world’s first recorded patient with what the medical community would eventually call pityriasis rubra pilaris. Fast forward 169 years. The PRP community has only been around since late 1997 when a …
Sharing data: Are you a skeptic? Updated: January 30, 2020. Most PRP patients/caregivers appreciate the importance of sharing data to help PRP researchers better understand pityriasis rubra pilaris. Because your information is personal and private, it is important that we safeguard any data you share. We hope that our data collection methodology encourages your enthusiastic participation in the upcoming PRP Worldwide Census. Confidential Data — While …
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There is no excerpt because this is a protected post.
Objective To better understand the role played by dermatologists and dermatopathologists in the diagnosis of PRP. Problem to be addressed While some PRP patients enjoy a relatively quick diagnosis of PRP, many of us have had to suffer through a differential diagnosis that preceded the “official” PRP diagnosis. During that time either the wrong treatment …