FDA convenes public workshop to discuss Consolidated Rheumatology Observational Registry
The Arthritis Foundation commends the Food and Drug Administration for convening a public workshop to discuss establishing a Consolidated Pediatric Rheumatology Observational Registry. The Arthritis Foundation has been advocating for such a registry for many years as called for in the Arthritis Prevention Control and Cure Act (H.R. 1210/S. 984).
The two-day public workshop will take place May 12 and May 13 in Silver Spring, Maryland. The purpose is to hear from stakeholders in the pediatric rheumatology community, the pharmaceutical industry and the public on the formation of a registry to collect and compile data on medications used, side effects encountered, and efficacy across all brands of drugs used to treat juvenile arthritis. Such a registry is a crucial step toward personalized medicine.
Among the participants will be Bernard Murphy, a member of the Arthritis Foundation's Board of Directors. Murphy is the parent of a child with juvenile arthritis and he serves as chair of the Juvenile Arthritis Alliance Leadership Group.
Read a summary of Murphy's remarks.