How do we learn about the PRP Worldwide Community?

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 Worldwide 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 to use the archives for PRP-related inquiries. It took several months to work my way through the emails gathering what I called “Core Data” which included an email address. This is what I called the EASY WAY.

PRP Worldwide Census

The first “official” census of the PRP community began in November 2013 and concluded in April 2014. During that period over 500 PRP patients or their caregivers, provided what we called “core data”.

✽  Name
✽  Location
✽  Email address
✽  Onset date
✽  Onset age
✽  Misdiagnoses
✽  Biopsy history
✽  Diagnosis date
✽  Information about the “diagnosing” dermatologist
✽  Information about the “treating” dermatologist
✽  Current status, e.g., active versus remission


PRP Facebook Posts & Comments

But the EASY WAY lost its momentum. That’s when I discovered the HARD WAY.

The alternative to the PRP Worldwide Census is to read the thousands and thousands of posts and comments by PRP patient and caregivers archived on the PRP Facebook Support Group’s webpage. As  questions are asked and answers shared, the “core data” can be harvested. That’s how the PRP Community Database evolved from May 2014 to the present. The problem with this approach is that too much data is missing.

As of August 30, 2018, the PRP Worldwide Census looks like this;

✽  Total number of PRP patients: 2,588
✽  Total Number of PRP patients we can reach: 1,678
✽  Reach via Facebook and RareConnect communities: 1,149
✽  Non-aligned but reachable via email: 529

Today I add new PRP patients as they join the PRP Facebook and RareConnect communities. There has to be a BETTER WAY. Unfortunately it takes money to pay someone to become a detective — starting with 88 teaching hospitals in the U.S., the American Academy of Dermatology and over 90 state and local dermatological societies, and the authors of published studies about PRP.

All it takes is money….

How do we learn about the PRP Worldwide Community?