Advocacy issues related to diagnosing PRP

Editor’s Note:
The timely and accurate diagnosis of pityriasis rubra pilaris is a goal shared by the worldwide PRP community. We are  confident that when a dermatologist suspects PRP and specifically instructs the dermatopathologist to look  it — a diagnosis  supporting clinical observations is the result.

Grand Rounds

We have no choice but to increase awareness of PRP among dermatologists. Towards this end we need to advocate participation in grand rounds by PRP patients who are “active”. Grand rounds is an opportunity for a gaggle of medical students and faculty to observe PRP “in the flesh”. This might be provide the moment a dermatologist recalls that leads him or her to a timely diagnosis of PRP.

Dermatopathology Research

We need to learn about the challenges dermatopathologists face when diagnosing pityriasis rubra pilaris. The first step would be to find one or more dermatopathologists willing to explain what they are looking for when they look at a slide under a microscope. The explanation we need is not the explanation given to medical students. We need a lay language explanation that a 13-year-old can understand. We need to find a dermatopathologist who is will to write a paper on diagnosing PRP. The PRP Facebook and RareConnect communities could be of assistance here as well.

2019 PRP Biopsy Survey

The PRP Alliance should consider conducting a formal 2019 PRP Biopsy Survey — an update and expansion of the 2013 PRP Biopsy Poll. Perhaps PRP researchers involved with the UCLA PRP Survey could help craft the questions. We can reach out to over PRP patients worldwide.

Let’s just call this food for thought.