PRP Alliance

By the Numbers — April 30, 2019

Editor’s Note:
This webpage focuses on the PRP Global Database as of April 31, 2019, the PRP-related data we capture, and why the data is 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 this database helps us all better understand the rare skin disease we call pityriasis rubra pilaris. Unfortunately, there are gaps in the “core data” we have harvested. In the charts below those “gaps” are identified a “N/A” or “Not Available”.

“Global” Overview

As of April 30, 2019, the PRP Global Database maintains “core data” regarding 1,854 PRP patients, of which 837 (45%) live in the U.S. and 603 (33%) live beyond the U.S. borders. A total of 414 (22%) PRP patient profiles do not include location, e.g., city, state/province, country. 

LOCATION is important for two reasons: (1) to help identify fellow patients who are literally “down the road” and (2) to help PRP patients and advocates organize states, provinces and countries.

“Country” Overview

The following table details the geographic distribution of the PRP patient population based on 1,351 PRP patient profiles. The highest concentration of PRP patient profiles includes:

❉  United States (837)
❉  United Kingdom (143)
❉  Australia (103)
❉  Canada (80)


“USA  by State” Overview

The “USA by State” table details the PRP patient population in the United States based on 837 PRP patient profilesThe highest concentration of PRP patient profiles includes:

❉  California (101)
❉  Texas (73)
❉  Florida (69)
❉  Pennsylvania (42)
❉  Virginia (35)
❉  New York (40)
❉  North Carolina (32)


“Valid Email Address” Overview

Nearly 58% of the 1,071 PRP patient profiles include a valid email address. Moreover, 584 are also members of the PRP Facebook Support Group. Unfortunately, 783 (42%) 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. The privacy policy remains firm: “We share NUMBERS, not 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 probing. The Onset Date includes an “estimated” month and an “absolute” year. While 1,007 (54%) of the PRP patient profiles include Onset Date, 847 (46%) are missing this critical datapoint.

“Onset Age” Overview

Onset Age  is a quick way to determine whether the PRP patient has a diagnosis of Adult Onset PRP or Juvenile Onset PRP. Only 726 (39%) of the PRP patient profiles include ONSET AGE while 1,128 (61%) are missing this critical datapoint.

❉  birth to 19: 127
❉  20 to 29: 29
❉  30 to 39: 49
❉  40 to 49: 108
❉  50 to 59: 175
❉  60 to 69: 171
❉  70 to 79: 57
❉  80 to 89: 10
❉  90 to 99: 2

“Current Status” Overview

When a PRP patient joins he PRP Facebook Support Group they are immediately classified as “Active”. However, there are  833 (45%) PRP patients identified as “Active” some of whom who might be in remission. Conversely, there are 374 (20%) PRP patients listed as “in remission” who have relapsed. Even more disconcerting, however, is that no one knows the current status of the 647 (35%) who have yet to share that information.

“Remission Date” Overview

The importance of gathering REMISSION DATE cannot be overstated, When we have ONSET DATE and REMISSION DATE,  the DURATION of a PRP journey can be calculated. For example: my onset date of August 8, 2012, and a remission date of April 8, 2014 reflects a duration of  20 months. However, one of the problems tracking remission-related information is the lack of a universally accepted definition.

❉  No symptoms with no meds
❉  No symptoms with meds
❉  Minimal symptoms with meds
❉  Minimal symptoms with no meds

While we currently have 374 Remissions, only 234 (64%) include REMISSION DATE. There is an ongoing effort to reach the 140 (36%) who have yet to share that information.

For more about remission, go to Chapter 4

 Now it’s your turn. Behold the 2019 PRP Global Census