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 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.

Today we collect data the hard way — one patient at a time. However, we maintain a contractual relationship with Constant Contact to assist in creating and distributing surveys.