HOLD FOR RELEASE
Pityriasis rubra pilaris (PRP) is a rare skin disease of unknown etiology, which medically is often difficult to treat. For a patient with PRP, the disease can completely alter one’s ability to work and attend school. Quality of life is often greatly reduced, and many patients experience profound psychological impact due to severe symptoms from their skin disease.
Our studies in Los Angeles at UCLA have helped describe the clinical course of PRP patients treated with various medications, and our data has been published in top dermatology journals reaching many dermatologists, providing valuable tools to help dermatologists treat patients with PRP. However, much remains to be learned about this rare disease.
With the assistance of the PRP Alliance, a joint project between physicians and medical students at UCLA Health, the University of Southern California, and Kaiser Permanente is underway to learn more about PRP. We aim to gather data on effective treatments, determine what other diseases co-exist with PRP, how often PRP runs in families, and learn about how PRP makes patients feel and affects their quality of life.
Our study is an anonymous survey through the UCLA Health Qualtrics system, to be distributed to patients with the assistance of Bill McCue, founder and president of the PRP Alliance, which maintains the largest collection and database on PRP patients including their contact information.
We believe that our study will provide exciting new insights into PRP. The knowledge that we gain will be shared with both dermatologists via academic journals and patients via the PRP Alliance. It will help dermatologists understand how to better manage patients with PRP, and help patients understand more about their disease. Ultimately, we are very much looking forward to this project, which will be a valuable advancement in our collective knowledge on PRP.
Thank you,
Scott Worswick, MD
University of Southern California, Keck School of Medicine
Lisa Hisaw, MD
Kaiser Permanente
Nolan Maloney, BS
UCLA Health, David Geffen School of Medicine