Social media helps recruit patients for rare studies

Social media is taking the world by storm.  Odds are you, or at the very least, someone you know has a Facebook page or a Twitter account. 

These two popular social media sites attract millions of users from all over the world. Their far reaches has helped the Mayo Clinic in Rochester, Minnesota recruit patients for new studies.

Researchers at the well known clinic are trying the technique to reach out to patients with a rare heart problem known as spontaneous coronary artery dissection, or SCAD.  Little is known about this disease.  Improvements in heart imagery has helped but now researchers are hoping to learn more with the help of social media.

Reaching out
“Patients with rare diseases tend to find one another and connect because they are searching for information and support,” says co-author Marysia Tweet, M.D. “Studies of rare diseases often are underfunded, and people with these conditions are quite motivated.”

How it started
A patient with this rare heart condition asked her doctor how she could help get more research done.  The doctor encouraged her to reach out to others with the same condition online.

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

Within a week 18 patients had responded, six more than could participate in the study.

The future
The new research 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.”

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