by Bill McCue, Founder & President, PRP Alliance, Inc.
A little bit of history…
When I was diagnosed with adult onset PRP on November 28, 2012, I immediately joined the PRPSupport Group and subscribed to their email-based forum. As a newcomer to that group, I was frustrated by the lack of response to the questions I posted.
✽ Does anyone live in the Dallas/Fort Worth area?
✽ Does anyone live in Texas?
✽ Does anyone have type 2 diabetes?
✽ What role do biopsies play in the diagnosis of pityriasis rubra pilaris?
My inspiration to create the PRP community database was, in large measure, an ever-growing series of unanswered questions. This was well before I joined the PRP Facebook Support Group.
My first step was to search the PRP-L Archives, at the time a repository of 175 months of emails covering the period November 1998 to May 2013. I searched for three specific terms: biopsy, biopsied and biopsies. My initial search identified 487 fellow PRP-L subscribers/members of the PRP Support Group.
A series of emails were sent to these PRP patients inviting their participation in a first-of-its-kind PRP Biopsy Poll. Remarkably, a total of 256 invitees (52.6%) shared their biopsy experiences and/or recollections. I documented my findings and shared the results with those who had participated as well as the 231 non-responders.
It took several months, but I eventually was able to review over 29,000 emails in the PRP-L archives and ultimately harvested over 1,500 email addresses. In November 2013 the PRP Alliance website was launched and I kicked off the first PRP Worldwide Census. While 500 of the first wave of 1,500 emails bounced back as undeliverable, nearly 1,000 found the inbox of a PRP patient or caregiver.
Back then the PRP Facebook Support Group had less than 120 members and there was no PRP Community on RareConnect. It was, however, the beginning of where we are now.
The Ebb & Flow of the PRP Community
The PRP community database was built from scratch — one record at a time.
Each record in the PRP community database represents a unique PRP patient. The PRP community database currently (04/05/2018) represents a total of 1,733 PRP patients who are “reachable” via the PRP Facebook Support Group (1,161), PRP Community on RareConnect (258) and/or a valid email address (1,006). Over the past five years we have lost contact with 743 PRP patients who have achieved some measure of remission and/or wanted to put PRP in their rear-view mirror to focus their energies elsewhere.
While we lament their disengagement, the focus remains on the 1,733 who are with us today.
What is the value of PRP patient data?
It’s all about research.
The PRP community database is not a PRP Patient Registry. However, the database has evolved to a point where it can be a resource to help researchers recruit appropriate participants. There is a soon-to-be-announced PRP research project where the parameters are quite specific.
✽ Diagnosis: Adult onset PRP
✽ Onset date 2016-2018
✽ Current status: Active or Acute
✽ Medication status: acitretin, methotrexate or none
When the PRP researcher finally gets the final go-ahead, the focus will shift to recruiting a small group of most qualified PRP patients. The PRP community database is the best place to start building the COHORT or patient participants.
Scope of PRP Community Updating Effort
In preparation for the upcoming PRP research project (May 2018), it is essential that 1,733 records in PRP community database be updated to include data that is currently missing.
1. Email addresses: missing 727
2. Locations: missing 642
3. Onset dates: missing 1,050
4. Onset ages: missing 1,109
5. Current statuses: missing 1,107
A. Who can participate in the updating of the PRP community database?
✽ Any member of the PRP community, whether patient (active or in remission), caregiver, family or friend may apply for this PRP Community Database Grant and undertake this effort as an independent contractor.
B. What is the scope of the effort to update the PRP community database?
✽ Contact all members of the PRP Facebook Support Group via email and/or Facebook messaging
✽ Contact all members of the PRP Community on RareConnect via email
✽ Contact the 535 PRP “unaligned” patients with email addresses via email
C. What are the time parameters impacting the updating the PRP community database?
✽ 144 hours based on 1,733 records and five minutes per record. Some updates will be accomplished quickly, others will require multiple contacts.
✽ Completion by June 1, 2018 is essential to support an upcoming PRP research project
D. What is the budget for updating the PRP community it database?
✽ $1,728 based on an hourly rate of $12 per hour. Funding of this effort is possible because of the financial support of PRP patients and caregivers.
✽ Incremental payments to the Independent Contractor will based on the achievement of specific updating milestones, e.g., 600, 1,200 and 1,733
E. Qualifications / Skills
✽ Internet access and computer literacy
✽ Technology — Database: Ability to work in Excel, Numbers and/or FileMaker
✽ Email savvy with a valid email address
✽ Member of the PRP Facebook Support Group
✽ Member of the PRP Community on RareConnect
F. Other Considerations
✽ Non-disclosure agreement to maintain confidentiality of patient data
✽ Awarding of the contract will require a majority vote of the PRP Alliance Board of Directors
Updating the PRP community database is the first project to be undertaken in 2018. Again, thanks to the generosity of the PRP community. There are sufficient funds to properly document the PRP patient population worldwide.
Please email questions regarding the PRP Community Database Updating Project to: bill.mccue@prpAlliance.org.
For those interested in reviewing a PRP Community Database Grant Application, please CLICK HERE.
Deadline for Submitting a Grant Application
is Sunday April 15, 2018
Please communicate any questions regarding the updating the PRP community database or requesting an application to bill.mccue@prpAlliance.org.