SPM member John Novack of Inspire.com sent this, about a project some members of an Inspire patient group created. They got the Mayo Clinic to explore whether a clinical trial can be done in a very unconventional setting: across the internet, instead of within one institution. The pilot project worked, and Mayo is rolling out a larger trial.

An Aug. 30 Wall Street Journal article, When Patients Band Together, details how women with a rare heart defect, spontaneous coronary artery dissection (SCAD), leveraged the online WomenHeart Support Community on Inspire to spur the Mayo Clinic to launch new clinical  research.

Sharonne Hayes, the Mayo cardiologist leading the project, said the social network “is a catalyst and it allows us (to) gather a critical mass of patients to learn more about this disease.” On the online community, the far-flung SCAD survivors routinely refer to each other as “SCAD sisters.”
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Did it work? I grabbed this excerpt:

Tuesday, results of a pilot study conducted by researchers at the Mayo Clinic are being published online by the journal Mayo Clinic Proceedings. The study, which involved 12 SCAD patients from the message board, found that it is feasible to collect data and medical records from patients with different doctors and from far-flung locales.

The study is a precursor to a much larger trial the clinic launched two weeks ago involving as many as 400 SCAD patients and an equal number of their close relatives.

You go, SCAD sisters! Go E!

 

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