Recently, a researcher told me that he’d be interested in learning more about using social media and networking sites to recruit participants for research studies. Here is an example that the Mayo Clinic shared this week.
Through patient-run websites dedicated to heart conditions and women’s heart health, a team of cardiologists 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.
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.
“Patient leadership in this is huge,” says study co-author Lee Aase, director of Mayo Clinic’s Center for Social Media. “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.”