Social networking rallies volunteers in Mayo Clinic study

Social networking has extended its reach in the clinical research community. The Mayo Clinic reports that online communities are driving participation in clinical studies for a rare heart problem called SCAD.

SCAD (spontaneous coronary artery dissection), a cardiac event that can cause heart attacks, affects an estimated few thousand Americans a year, and there had been no clinical studies focused on treatment plans for the rare ailment--that is, until a patient who had SCAD rallied others with the condition via an online support group called WomenHeart: The National Coalition for Women with Heart Disease, according to the Mayo Clinic's release. Working with the Mayo Clinic, the survivor was able to recruit volunteers for a 12-patient pilot study. That research has led to a larger study of SCAD patients, who will be recruited via social networking and other methods.

"This is a completely different research model than Mayo Clinic is used to," the Mayo Clinic's Dr. Sharonne Hayes, who is involved in efforts to recruit SCAD survivors for the studies, said. "Investigators here typically rely on the stores of patient information from the clinic. This was truly patient-initiated research."

For some veteran trials recruiters, social media has already proved useful. Facebook and other social networking sites have proven to be cost-effective ways to tap patients for clinical trials after, at least in some cases, groups have found traditional outreach to be expensive and inefficient. Also, the online patient community provider PatientsLikeMe has tapped its users to generate evidence about the effects of lithium treatment on patients with ALS, along with other efforts to get its members to participate in trials.

Social networking could be particularly potent in driving enrollment in studies for rare disease treatments. There are 6,000 to 7,800 rare diseases that affect fewer than 200,000 patients on radar of the NIH's Office of Rare Diseases Research, according to the release. And in the case of the Mayo Clinic's study of SCAD--which causes the inner layer of a coronary artery to peel off and, in some cases, fatally block blood flow--a survivor of the condition was able to navigate an online channel to find other patients interested in improving treatment for the disease.

- here's the release
- see the WSJ's report (sub. req.)

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