06.01.12 Jean-Luc Deslauriers Memorial Research Award
Since pityriasis rubra pilaris was first described in 1883, there has been a dearth of research to improve diagnosis and treatment. Why?
Patient pool too small
With a prevalence rate of one in 400,000, there has never been an easy-to-access pool of PRPers available to participate in PRP-related research. Compare the active populations in the U.S. of three skin disorders:
‣Active PRP: 972
‣Active psoriasis: 7.2 million
‣Active eczema: 31 million
Hopefully the pool of PRPers eager to get involved with PRP research, will increase dramatically over the next 12 months.
Rare disease research is poorly funded
The PRP Alliance is an advocate for what might be called the Heavy Lifting Paradigm. The PRP Community can make PRP research attractive, if we line up the ducks, e.g., participants and data.
Rare disease research gets little recognition
When there is a credible research effort that focuses on PRP, we have a responsibility to support that effort. The Jean-Luc Deslauriers Memorial Research Award has been created to recognize such a credible research effort.
This award is named after the founder of the PRP Support Group. With passion and understanding, Jean-Luc was the guiding force behind the establishment of an email-based support group in November, 1997.
Over the past 17 years, the PRPSG has served thousands of PRPers and spawned an independent PRP Facebook Support Group, as well as the PRP Alliance.
Jean-Luc lamented the lack of meaningful PRP research. This award is offered in humble recognition of his vision and the hopes of PRPers on the journey from Onset to Remission.
PROCLAMATION
WHEREAS
Jean-Luc Deslauriers (1948-2003) was the founder of the PRP Support Group and long-time advocate for PRP Research;
WHEREAS
The Jean-Luc Deslauriers Memorial Research Award has been created to recognize achievements in PRP research undertaken to improve the diagnosis and treatment of pityriasis rubra pilaris;
WHEREAS
Thomas Jefferson University’s Department of Dermatology and Cutaneous Biology has undertaken PRP Research to improve the diagnosis and treatment of pityriasis rubra pilaris;
WHEREAS
Ninety-two PRPers shared their PRP experience with the study team through photographs, letters, emails and surveys;
WHEREAS
The confidentiality of all participants has been maintained in accordance with federal regulations;
WHEREAS
The PRP Research will be ongoing and more participants may be enrolled;
THEREFORE BE IT RESOLVED
That the PRP Alliance, on behalf of the PRP Community, hereby awards the first Jean-Luc Deslauriers Memorial Research Award to the Thomas Jefferson University PRP Research Team including:
‣Jouni Uitto, MD, Ph.D., Professor and Chair
‣Qiaoli Li, Ph.D., Assistant Professor
‣Hye Jin Chung, M.D., Dermatopathology Fellow
‣Nick Ross, Research Assistant
The award shall be presented at the American Academy of Dermatology 73rd Annual Meeting in San Francisco, California (March 20-24, 2015)
No monetary gain has been offered or received by any parties associated with this award.
Published in On the Road, November 2014, page 9