SCAD

How social media helps us study rare diseases

When a team of cardiologists wanted to better understand an extremely rare heart condition called spontaneous coronary artery dissection (SCAD), they reached out to possible participants on patient-run social-media sites dedicated to women's heart health.

It was something of a shot in the dark, but Mayo Clinic cardiologist Sharonne Hayes says that in doing so, her team stumbled on a novel way to recruit participants who are notoriously hard to track down.

"This is a completely different research model than Mayo Clinic is used to," said Hayes, whose findings appear in Mayo Clinic Proceedings. "Investigators here typically rely on the stores of patient information from the clinic. This was truly patient-initiated research."… Read more