From the Editor (updated 10/16/2020) — The PRP patient database began during the summer of 2013 and has grown to include 2,240 records of which 1,860 are members of the PRP Facebook Support Group and 380 are non-aligned but have a valid email address. Each PRP patient profile focuses on seven datapoints we classify as CORE DATA.
1. Name: Bill McCue (pt)
If not already indicated, please identify NAME(S) as either patient (pt), caregiver (cg), or circle of Support (cos). Remember, each PRP patient profile has been assigned a unique 4-digit control number to ensure privacy. If a family includes more than one PRP patient, each patient has his/her own PRP patient profile.
2. Location: Plano, TX
We are NOT seeking street addresses, apartment numbers, or postal codes. All we need is the City/Town, State/Province, and Country. We want to be able to better define the PRP Global Community geographically, e.g., state by state, province by province and country by country.
Based on a prevalence rate of one in 400,000 and with a population of 328.6 million, the USA should have 821 “active” PRP patients. The PRP Global Database has identified 528 who are “active” and 236 “in remission”.
Based on a prevalence rate of one in 400,000 and with a population of 29.1 million, Active PRP patients, Texas should have 72 “active” PRP patients. The PRP Global Database has identified 45 who are “active” and 20 “in remission”.
3. Email: papa.bill@mac.com
There are two reasons why we need an email address: (1) research and (2) awareness.
Research — Most PRP research involves one, two or three patients. The PRP community is the reason that Thomas Jefferson University had a “cohort” (group of participants) of 105 PRP patients. Last November, the Global PRP Community created the largest cohort in PRP research with 574 PRP patients, or their caregivers, responding to a “serious survey” conducted by UCLA, USC and Kaiser Permanente dermatologists.
Newsletter — On May 2, 2019, a PRP community newsletter was launched to “push” information to the Global PRP Community. A valid email address will be the only way to receive “On the Road…the Journey from Onset through Remission”.
Your name and/or email address will not be sold or shared with any third party — including researchers. The most they will see is a four-digit identification code.
4. Onset Date: 2012 08
Onset includes two datapoints; Date and Age. When did the symptoms of PRP first appear? This is NOT the date you were diagnosed. All we need is the onset year and an estimated onset month. There is wiggle room.
5. Onset Age: 66
What was your age when the symptoms of PRP first appeared. The Onset Age makes it easy to differentiate between adult onset (Types 1 and 2) and juvenile onset (Types 3, 4, and 5).
6. Current Status: Remission
There are two options for Current Status: “Active” and “Remission”:
Active is easy. The PRP Global Database has identified 820 PRP patients who are self-reported as “Active”. This also means that DURATION is the calculation we make using Onset Date and Current Date.
The definition of “Remission” is more of a challenge. At one end of the “Remission Spectrum” is no symptoms/no meds. At the other end is “Lingering and relatively inconsequential symptoms with or without meds.” Perhaps a better definition could be “No longer active” which could be translated: “I’ve got my life back.”
7. Remission Date: 2014 04
How long will my PRP last? That’s the question in need of a cogent answer.
When a PRP patient is in remission and has provided BOTH the Onset Date and Remission Date, the PRP Global Database makes the calculation of DURATION based on months. There are 201 PRP profiles where Onset Date and Remission Date are properly entered.
Now it’s your turn!
Those who have received their PRP Patient Profile via email, simply REPLY to the email and update information that is incorrect or incomplete.
Those who have yet to receive their PRP patient profile, please request your profile via email to bill.mccue@prpAlliance.org.
It’s that simple.
