Social Media: Recruiting Tool For Studies
September 1, 2011 by UPI - United Press International, Inc.
ROCHESTER, Minn., Aug. 31 (UPI) — Social media and online networking offer a novel way to recruit study participants for rare diseases, U.S. researchers suggest.
Dr. Sharonne Hayes 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. SCAD is a traumatic cardiac event that often induces heart attack but physicians have no clinical studies on which to base treatment plans, Hayes says.
The study, published in the Mayo Clinic Proceedings, finds 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.
“Patients with rare diseases tend to find one another and connect because they are searching for information and support,” Hayes says in a statement. “Studies of rare diseases often are underfunded, and people with these conditions are quite motivated.”
A SCAD survivor approached Hayes asking how she could spur more research into the unusual condition. Hayes’ research team asked the survivor to help recruit participants through an online support community on the Web site for WomenHeart: The National Coalition for Women with Heart Disease, http://www.womenheart.org.
“This is a completely different research model than Mayo Clinic is used to,” Hayes says. “Investigators here typically rely on the stores of patient information from the clinic. This was truly patient-initiated research.”