PRP Alliance to Update 2013 Biopsy Poll

From the Editors: During the summer of 2013, a total of 487 PRP patients were polled by email and given an opportunity to participate in a first-of-its-kind PRP Biopsy Poll. Remarkably, within a 3-week period, a total of 256 invitees (52.6%) shared their biopsy experiences and/or recollections.The primary objective of the PRP Biopsy Poll was to better understand the role played by biopsies in the diagnosis of PRP from the perspective of a PRP patient

2013 PRP Biopsy Poll

It was a simple poll with only two questions.

(1)  How many biopsies have you had that supported a PRP diagnosis?
(2)  How many biopsies have you had that failed to confirm PRP?

Based on the results, however, a benchmark for a future biopsy-related survey was established.

✽    Diagnosis with no biopsy ordered: 7.8%
✽    Diagnosis with no contradictory biopsy: 45.3%
✽    Biopsy supported diagnosis: 23.4%
✽    Diagnosis with no confirming biopsy: 23.4%

2018 PRP Biopsy Survey

Since participation in the 2018 PRP Biopsy Survey will require a completed PRP Census form, we will have more dots to connect.

✽    Elapsed time from onset to diagnosis
   Misdiagnoses that preceded the PRP diagnosis
   Adult onset versus juvenile onset (based on onset age)
   Duration based on onset date and current status

Questions to ask dermatopathologists

While we are surveying PRP patients and caregivers, we should recruit an advisory committee of dermatopathologists. The following questions might be a good place to start.

✽    How should a biopsy be performed to increase the likelihood of a timely PRP diagnosis? Is there a right way? Wrong way? Better way?
✽    What specific signs or indicators should a dermatopathologist be looking for as they review the biopsy slides?
✽   Are the characteristics of PRP really so elusive that they cannot be easily seen?
✽   How important is it for the dermatologist who performs the biopsy to specifically instruct the dermatopathologist to “consider” or “look for” PRP.

Path Forward

The ongoing status of the 2018 PRP Biopsy Survey  will be update in future issues of the PRP community newsletter —  On the Road….

For additional information about diagnosing PRP, go to Chapter 2 of the PRP Survival Guide.

PRPA Plans Biopsy & Efficacy Surveys: OTR025.4 

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