Mayo Clinic study harnesses social media to study rare disease

We’ve previously looked at a couple of studies in which patient participants used social networks (PatientsLikeMe.com and TuDiabetes.org) to organize themselves for clinical study and even facilitate data collection.  We’ve also looked at a whitepaper on how social networks can be leveraged for recruitment of clinical trial participants.

Today even the Wall Street Journal carried news of a study from Mayo Clinic that used social networks to help identify and contact potential study participants with an extremely rare condition (spontaneous coronary artery dissection, or “SCAD”).  A motivated SCAD survivor approached a Mayo doctor to ask how she could help encourage more research into the condition.  According to this Mayo press release, “The research team then asked the survivor to help recruit participants through an online support community on the website for WomenHeart: The National Coalition for Women with Heart Disease, www.womenheart.org.”  Within one week of IRB approval, they had 18 possible participants for a pilot study that could only accommodate 12 — and now with the results of that pilot, the researchers have not only a blueprint for future research, but also a powerful new strategy for recruitment.

The study is being published in the current issue of Mayo Clinic Proceedings:

Tweet MS, Gulati R, Aase LA, Hayes SN. Spontaneous coronary artery dissection: a disease-specific, social networking community–initiated study. Mayo Clin Proc. 2011 Sept;86(9):845-850. doi:10.4065/mcp.2011.0312

UT Health Science Center students, faculty and staff can access the study at this link.

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