Some people are asking questions about our campaign to help the Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) fund a new and improved registry. I realize many people might have these same questions, so I thought I’d take a few minutes to explain the PR-COIN registry.

I’ve received a few messages from people asking, “What is a registry?” A registry is a computer database used to store information about the health and care of a patient. You may be thinking, “Wait, my child’s hospital already stores all of that information. Why does PR-COIN need its own registry when all that information is already available in my child’s electronic health record (EHR)?”

The simple answer is that PR-COIN doesn’t just want to improve care and outcomes for a handful of JIA children at one hospital. They want to identify and share best practices across participating hospitals and improve care and outcomes for ALL children with arthritis and other rheumatic diseases no matter where they go for care.

“Say what?! That’s a huge goal!” Yes, it is, but it’s achievable with the right tools, like a registry that both supports improvement in quality of care and helps drive discovery through studying data collected at regular clinic visits. Using such a shared registry to improve patient outcomes is one of the reasons PR-COIN is called a “learning health network.” The best way to explain how is to demonstrate the use of a PR-COIN registry with a project like Treat to Target.