A Link to Biospecimens

A key feature of the registry, and the one that’s perhaps most exciting to investigators, is the collection of blood samples that will be stored and analyzed in conjunction with the self-reported data.

“A major bottleneck in RA research is access to clinical data linked with biospecimens, for example DNA and serum,” Dr. Plenge says.

As part of the second round of information collection, participants will get a pre-printed order form that they can take to any Quest lab location. Quest will draw a blood sample and will test the blood for antibodies like anti-CCP and rheumatoid factor and for inflammatory markers like C-reactive protein. The results will become part of that participant’s numbered file, and some of the serum and blood will be stored for genetic studies and future analysis.

‘A Social Experiment’

While most registries never report their results or findings directly to patients, AIR has the stated goal of creating a social network where study participants can interact, supporting and learning from each other. And eventually, organizers say they want to be able to give people results from their own tests as well as larger group findings from the study.

“It’s kind of a social experiment,” Dr. Plenge says, “But I think it would be a really nice thing to do.”

It’s an experiment that has already worked at other sites. The Web community PatientsLikeMe, a social networking site for people with serious and chronic illnesses, has groups that actively participate in research and some that even generate their own investigations. The Amyotrophic Lateral Sclerosis (ALS) group, which has about 3,700 members, was able recently able to query its members about their experience with the drug lithium after early research suggested that it might benefit the disease. The results were immediately graphed and posted on the site.

“By using the Internet to query and interact with the research cohort, this platform significantly increases the efficiency and reduces the cost of recruiting participants and conducting research,” according to a company press release says.