Social media and online networks could be of particular value in initiating, and recruiting patients for, studies of sometimes neglected rare medical conditions, US-based non-profit Mayo Clinic has found.
A pilot study set for publication in the September issue of Mayo Clinic Proceedings suggests that recruitment through social networks could help researchers to assemble large and demographically diverse patient groups more quickly and inexpensively than traditional outreach methods, the Clinic says.
A team of cardiologists led by Dr Sharonne Hayes, founder of Mayo’s Women’s Heart Clinic, have been using patient-run websites dedicated to heart conditions and women’s heart health to connect with survivors of spontaneous coronary artery dissection (SCAD), a heart condition that affects just a few thousand Americans each year.
The aim is to build a virtual registry and DNA biobank of up to 400 SCAD survivors and their relatives. This database will help physicians to conduct more detailed analyses of treatment strategies and factors affecting SCAD prognosis and to understand better the potential genetic basis of some cases, Mayo Clinic explains.
Patient-initiated
The impetus for the study came from a SCAD survivor, who approached Dr. Hayes and asked how she could encourage more research into the condition.
Dr. Hayes’ research team then asked the woman to help recruit study participants through an online support community on www.womenheart.org, the website for WomenHeart: The National Coalition for Women with Heart Disease.
The study accrued 18 participants in less than a week, six more than could take part in the 12-patient pilot phase. The remaining volunteers are eligible to participate in a new, larger study based on the success of the pilot.
Study vacuum
SCAD is a traumatic cardiac event that often induces heart attack, yet physicians have no clinical studies on which to base treatment plans, Dr Hayes noted.
“Patient leadership in this is huge,” said Lee Aase, director of Mayo Clinic’s Center for Social Media and co-author of the study to be published in Mayo Clinic Proceedings.
“Designing research protocols to study rare diseases and then recruiting enough patients to participate is extremely difficult for busy physicians, but patients with rare diseases are highly motivated to see research happen.”
The research model used for the study was completely different from standard Mayo Clinic practice, Dr Hayes observed. “Investigators here typically rely on the stores of patient information from the clinic. This was truly patient-initiated research.”
In an editorial, accompanying the published study, Dr Barbara Brandom from the department of anesthesiology at the University of Pittsburgh Medical Center commented: “Authority and responsibility for research into rare medical conditions are devolving from the researchers to the patient-participants”.
