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.

And unlike many other registries, patients enroll themselves rather than clinicians enrolling them (although an enrollee’s physician will verify the diagnosis). As a result, the registry is seen as a way of creating a databank of real-world information not found elsewhere, including descriptions of the natural course of a disease, which therapies work and under what conditions, side effects, safety issues and more. By collecting enough information, the registry can help uncover trends, and will be more reflective of the way people actually live with arthritis.

Self-enrollment by patients – one of several factors that sets AIR apart from other rheumatology registries – will enable them to network with each other, lending support and offering tips. Another distinguishing factor is that, through the participation of Quest Diagnostics, AIR is collecting blood samples that can be analyzed and stored for later use. Researchers plan to use AIR to study biomarkers that predict the severity of RA and response to treatments, as well as the hereditary aspects of arthritis.

After enrollees are accepted and their diagnosis is confirmed, they will receive questionnaires every six months that touch on their ability to function, medical problems and hospitalizations, treatments for RA and other conditions, quality of life, costs of treatment and employment. They also will receive a form they can take to any Quest Diagnostics lab to have their blood drawn and tested for antibodies like anti-CCP, rheumatoid factor and C-reactive protein.

A partnership between nonprofit and for-profit organizations, AIR uses the infrastructure of the National Data Bank for Rheumatic Diseases, the lab capabilities of Quest Diagnostics, and outreach and funding from the Arthritis Foundation.

After the registry showed successful results in its first year, the Foundation increased funding to boost enrollment. With that goal in mind, the webpage where patients enroll has been redesigned with more prominent and user-friendly buttons and instructions.

“As we move forward, we want to customize AIR enrollment according to the participant’s ability to respond. For example, we want to be able to call patients who don’t have easy access to the Internet or are in too much pain to use a computer,” Michaud says. “We want to be able to reach out to all people with arthritis – those who are doing well on their treatments and those who have significant pain and disability.”