After a successful first year of the Arthritis Internet Registry, dubbed AIR, investigators are kicking up enrollment efforts, aiming to make it the largest registry of people with arthritis. The registry creates a centralized bank of information, which promises not only to support research for treatments, but also eventually to connect people who have arthritis with each other.

“AIR is meant to create a community of patients unlike any that currently exists. We want to empower the patient through online information about their disease, social networking for patients with similar diseases, and computer tools – for example, iPhone apps – to help them communicate with their health care providers,” says Robert Plenge, MD, PhD, explaining the long-term vision for the project. “In doing so, AIR will enable cutting-edge research to understand fundamental mechanisms of disease.” Dr. Plenge is a rheumatologist and geneticist at Harvard University and one of the lead AIR researchers.

Developed by the Arthritis Foundation in conjunction with the National Data Bank for Rheumatic Diseases and Quest Diagnostics, the registry was launched in June 2010. Almost 1,000 people enrolled in the first year, according to the findings of a feasibility study presented at the 2011 scientific meeting of the American College of Rheumatology. The researchers hope to hit 3,000 by the end of 2012, with the eventual goal of 20,000.  

Although rheumatoid arthritis, or RA, is the primary focus of the AIR project, people with all types of arthritis are encouraged enroll. “The more data we have the better,” says Kaleb Michaud, PhD, co-director of the National Data Bank for Rheumatic Diseases and director of the AIR effort. “While we have more researchers currently conducting studies with the RA patients, we do have a couple that are interested in [osteoarthritis], and are often limited by the numbers available. Once more are enrolled, more researchers will want to use the AIR.”

Compared with randomized controlled trials, which gather information based on homogenous groups of patients, patient registries are more inclusive. “Clinical trials have an inherent bias. The patient population enrolled in clinical trials meet strict criteria and represent only about 5 percent of all people with RA,” says Michaud.