When the stimulus funds run out in the fall of 2011, the project’s leaders hope to have another funding mechanism in place – the drug companies themselves. What’s the incentive for getting these manufacturers – who may be leery of research that indicates one medication is better than another – to participate? That’s where the FDA comes in.

“What they can do is mandate that the manufacturers participate in and help fund this registry,” Melnick says. It’s a simple equation – you want FDA approval for your next arthritis medication? Help fund the registry.

Murphy also is seeking additional funding outside the medical and pharmaceutical arena. “We’re trying to broaden our reach outside pharma into other groups that may not realize they’re stakeholders,” he says. “Arthritis-related loss of productivity can affect almost any industry.”

While there is no precedent for such a registry in the arthritis community, there is Children’s Oncology Group (COG) which grew out of clinical trials and now encompasses 200 cancer treatment institutions worldwide. In 2001 the National Cancer Institute funded COG’s registry effort, the Childhood Cancer Research Network (CCRN), which functions much the same as CARRA-net.

At present, the potential database for JIA patients hovers around 300,000 in the United States. However, Murphy says European scientists are working with those in the U.S. to integrate databases, thus upping the sample size. “If you can integrate it worldwide, or at least with the E.U., Canada and perhaps Latin America, the sample size becomes larger and much better.”

Murphy, whose daughter Kate, now 18, was diagnosed with JIA at age 6, takes a long-term view of the effort. “I recognize at this point – as do many of the folks who have been in this for a while – that this isn’t going to help my child. But over 10 years or 15 years, the next few generations of kids coming up with this disease are going to be helped tremendously. That really gets to the heart of it with parents. There’s a sense of relief in the room when you can say that your government is behind this and there’s a big group of very dedicated individuals working toward getting this done.” 

What is the CARRA Registry?

The CARRA Registry is a database of patients with pediatric rheumatic diseases. Researchers will study information in the database to improve future treatments and health outcomes and maybe even prevent or cure pediatric rheumatic diseases in the future. The registry will also help identify patients who may be eligible for future studies. The CARRA Registry plans to enroll about 20,000 patients at about 60 CARRA centers.