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Mayo Clinic finds social media valuable tool to recruit study participants for rare diseases
Date:8/30/2011

ROCHESTER, Minn. - Mayo Clinic has identified a new benefit of social media and online networking: a novel way to study rare diseases. Through patient-run websites dedicated to heart conditions and women's heart health, a team of cardiologists led by Sharonne Hayes, M.D., is reaching out to survivors of spontaneous coronary artery dissection, also known as SCAD, a poorly understood heart condition that affects just a few thousand Americans every year.

Study recruitment through social media and online networks could help researchers assemble large and demographically diverse patient groups more quickly and inexpensively than they can using traditional outreach methods, according to the study, set for publication in the September issue of Mayo Clinic Proceedings.

"Patients with rare diseases tend to find one another and connect because they are searching for information and support," says co-author Marysia Tweet, M.D. "Studies of rare diseases often are underfunded, and people with these conditions are quite motivated."

SCAD is a traumatic cardiac event that often induces heart attack, but physicians have no clinical studies on which to base treatment plans, says Dr. Hayes, lead author of the study and founder of Mayo's Women's Heart Clinic.

A SCAD survivor inspired the pilot study. The woman approached Dr. Hayes asking how she could spur more research into the unusual condition. Dr. Hayes' 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. The SCAD survivor and Dr. Hayes already were affiliated with the site.

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

The study landed
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Contact: Traci Klein
newsbureau@mayo.edu
507-284-5005
Mayo Clinic
Source:Eurekalert

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