How it Works

In contrast to the way other registries work, however, where people are enrolled through their physicians, anyone who has ever been diagnosed with arthritis can self-enroll in AIR, through the Arthritis Foundation’s website: (http://www.arthritis.org/arthritis-internet-registry.php).

“I thought, ‘I want to see how easy this is’,” says Kathleen Ferrell, a retired physical therapist with RA from St. Louis, MO.

“I was in the car wash, using my iPhone,” says Ferrell. “It’s very convenient.”

The next day, she answered a follow-up questionnaire.

All told, she estimates that it took about 30 minutes to enroll.

“There are questions about your functional level, medications, activity, how often you have been to a doctor, how many times to a rheumatologist, out-of-pocket costs, things like that,” says Ferrell, a volunteer with the Arthritis Foundation since the 1970s who pushed for the registry’s creation.

Initially, in its pilot phase, AIR will focus on people with RA, but if it proves to be successful it may later incorporate active research arms for OA and other kinds of rheumatic diseases.

Once they pass the initial screening, which includes contact with the person’s physician and validation of their diagnosis, participants will be asked to fill out new questionnaires every six months.

Dr. Plenge says security and patient privacy are paramount.

“There are all sorts of safeguards in place to protect privacy,” he says. “There’s no link to personal information and no way I, as a researcher, could ever actually contact that person.”