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Mayo Clinic uses social media to recruit rare disease study participants

It’s faster, better, cheaper.

Mayo Clinic has found that social media can be leveraged as a tool to quickly recruit large numbers of study participants when researching rare diseases, signaling a break from traditional, more expensive methods of study recruitment.

After all, people with rare conditions tend to seek each other out and what better and quicker way to do that these days than to network online. In Mayo’s case, cardiologists engaged in a study of spontaneous coronary artery dissection (SCAD). The disease, which afflicts only a few thousand Americans yearly, is not very well understood. The disease may prompt a heart attack but there are no clinical studies on which to base a treatment.

The pilot study led by Sr. Sharonne Hayes and her team of cardiologists was prompted by a SCAD survivor who wanted to know more about the condition. That led Hayes’ research team to request 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. Both she and Dr. Hayes were affiliated with the site.

The response was overwhelming as 18 people responded in less than a week. In the end 12 participants from four countries were selected for the the study. Indeed researchers here believe that social media can quickly pull together a large number of study participants from a demographically diverse group than conventional methods.

“This is a completely different research model than Mayo Clinic is used to,” Dr. Hayes said in a Mayo news release. “Investigators here typically rely on the stores of patient information from the clinic. This was truly patient-initiated research.”

The aim of the pilot study, which will be followed by a larger study of SCAD, is to build a virtual registry and DNA biobank of up to 400 SCAD survivors and their relatives. The database will enable doctors to conduct more detailed analyses of treatment strategies as well as factors that affect prognosis. That, in turn, may prompt a better understanding of the possible genetic basis of some SCAD cases.

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