Editor’s Note:
This webpage provides an overview of the PRP Global Database as of July 1, 2020.
✱ What PRP-related data have we captured? What is still missing?
✱ Why is the data we seek so important to every member of the PRP global community?
Whether you are a patient, loving caregiver (spouse, partner, or parent), an extended family member, friend or a healthcare professional, the data we have amassed in our database helps us all better understand the rare skin disease we call pityriasis rubra pilaris. NO ONE ELSE is collecting this information.
While we have the largest PRP database in the world, it is still incomplete. Gaps in the “core data” are noted as N/A.
“Global” Overview
As of June 8, 2020, the PRP Global Database maintains “core data” regarding 2,146 PRP patients.
We know that of the 1,837 responding, 1,025 (56%) live in the U.S. and 812 (44%) live beyond the U.S. borders.
We also know that a total of 309 (14%) PRP patient profiles do not include location, e.g., city, state/province, country.
LOCATION is important for two reasons:
(1) to help us identify fellow patients who may be living “down the road”, and
(2) to help identify PRP-savvy dermatologists for PRP patients searching for a second opinion or a more competent healthcare professional,
“Country” Overview
The following table details the geographic distribution of the PRP patient population based on 2,046 PRP patient profiles. With a total of 1,833 (87%) responding, 1,405 (77%) PRP patient profiles are found in four countries.
❉ United States: 1,010
❉ United Kingdom: 173
❉ Australia: 127
❉ Canada: 95
“USA by State” Overview
The “USA by State” table details the PRP patient population in the United States based on 1,007 PRP patient profiles. The highest concentration of PRP patient profiles includes:
❉ California: 130
❉ Texas: 86
❉ Florida: 84
❉ New York: 53
❉ Pennsylvania: 50
❉ Virginia: 42
❉ North Carolina: 41
“Valid Email Address” Overview
Only 997 (49%) of PRP patient profiles include a valid email address. Moreover, 626 are also members of the PRP Facebook Support Group.
Unfortunately, 1,049 (51%) have yet to share their email address.
Since the summer of 2013 when the PRP Global Database was created, NO email address has ever been shared with any third party — including PRP researchers. Confidentiality remains the highest priority: “We share NUMBERS, never NAMES.
“Onset Date “Overview
The Onset Date is the first part of the calculation to document the elapsed time from onset to remission. While PRP patients and caregivers are quick to remember the date a dermatologist rendered the official diagnosis of PRP, the Onset Date often requires thoughtful recollection.
The Onset Date includes an “estimated” month and an “absolute” year. While 1,347 (66%) of the PRP patient profiles include Onset Date, 798 (34%) are missing this critical datapoint.
❉ Class of 2020: 25
❉ Class of 2019: 195
❉ Class of 2018: 163
❉ Class of 2017: 141
❉ Class of 2016: 111
❉ Classes of 2010-2015: 379
❉ Classes of 2000-2009: 219
And the real old-timers…
❉ Classes of 1949-1999: 115
“Onset Age” Overview
Onset Age is an efficient way to determine whether the PRP patient has a diagnosis of Adult Onset PRP or Juvenile Onset PRP. If puberty is a factor in determining Juvenile Onset versus Adult Onset, then there are 198 under the age of 15.
Only 1,061 (49%) of the PRP patient profiles include ONSET AGE while 1,085 (51%) are missing this critical datapoint. For the record, the median onset age is 52.
❉ birth to 9: 167
❉ 10 to 19: 59
❉ 20 to 29: 50
❉ 30 to 39: 71
❉ 40 to 49: 141
❉ 50 to 59: 250
❉ 60 to 69: 223
❉ 70 to 79: 78
❉ 80 to 89: 18
❉ 90 to 99: 2
We have the world’s largest PRP database. The question is:
“Do we have the correct information about you?”
✭ Is your LOCATION complete and correct?
✭ Is your PRP Onset Date (month/year) correct? ✭ Is your PRP Onset Age correct? ✭ Is your PRP patient profile correct?
Take a few moments and request a copy of your PRP patient profile. A copy will be emailed to you.