Mayo Clinic: Social media a valuable tool for studying rare diseases

Social media and online networking could provide a novel way to recruit patients with rare diseases for clinical studies, according to a new study by the Mayo Clinic.

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The study demonstrates how tools such as these aided in the recruitment of patients with a rare heart condition called spontaneous coronary artery dissection, also known as SCAD.

Through patient-run websites dedicated to heart conditions and women's heart health, a team of cardiologists led by Sharonne Hayes, MD, is reaching out to survivors of SCAD, a poorly-understood 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 could using traditional outreach methods, according to the study, which is 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, MD. "Studies of rare diseases often are underfunded, and people with these conditions are quite motivated."

[See also: Social media shows promise for clinical trials]

SCAD is a traumatic cardiac event that often induces heart attack, but physicians have no clinical studies on which to base treatment plans, says 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 Hayes asking how she could spur more research into the unusual condition. In response 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. The SCAD survivor and Hayes already were affiliated with the site.

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

The study landed 18 participants in less than a week, six more than could participate in this pilot of 12 patients. The remaining volunteers are eligible to participate in a new, larger study based on the initial study's success.

The new research seeks patients through conventional and social media outlets and aims to build a virtual registry and DNA biobank of up to 400 SCAD survivors and their relatives. The database will help physicians conduct more detailed analyses of treatment strategies and factors that affect prognosis and better understand the possible genetic basis of some SCAD cases.