How do we learn about the PRP Worldwide Community?


There are two ways we gather information about the PRP community — the easy way and the hard way.

✽  Easy way: PRP Worldwide Census
✽  Hard way: PRP Facebook posts and comments

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 (remission date if applicable)

CLICK HERE to learn more about the current PRP Worldwide Census


PRP Facebook Posts & Comments

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 ask 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 November 21, 2017 with 1,607 “PRP Profiles”. we are missing the following:

 Location: 481
 Email addresses: 604
✽  Onset date: 922
✽  Onset age: 981
✽  Diagnosis date: 945
✽  Current status: 970

CLICK HERE to complete your PRP Worldwide Census form.

We learn about PRP by sharing what we know about our individual journeys. When we combine what we know, we learn something new.

 Onset of PRP by age
 Time it takes from onset to an “official” diagnosis
 Time it takes to travel from onset to remission

… And so much more.

 

How do we learn about the PRP Worldwide Community?

3 Replies to “How do we learn about the PRP Worldwide Community?”

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