Social media helps Mayo research rare medical condition
Traumatic heart condition mostly affects women
Two months after the birth of her second son, Katherine Leon found herself experiencing chest pain so intense that it left her struggling to breathe. Leon, who was 38 years old at the time, immediately thought it was heart attack.
Leon was having a heart attack, but an angiogram, revealed that it was caused not by a typical plaque blockage, but by spontaneous coronary artery dissection (SCAD), an uncommon and poorly understood heart condition that affects only a few thousand Americans every year — mostly young women.
Spontaneous coronary artery dissection
Spontaneous coronary artery dissection (SCAD) occurs when a split develops suddenly between the layers of the wall of one of the blood vessels that provides blood flow to the heart. Arteries consist of three layers, and during SCAD, the inner layer of one of the coronary arteries tears and can peel away from the middle layer. The resulting flap of tissue can partially or completely block blood flow, leading to a heart attack.
No clinical trial, varied treatments
After her diagnosis, Leon began researching her condition and that research quickly turned up many questions. She then turned to the Internet for answers and to try and find other SCAD patients.
Leon and 85 other SCAD patients from all over the world soon found each other through an online support group on the online community of WomenHeart: The National Coalition for Women With Heart Disease. Prior to this virtual meeting, none of them had ever "met" another person with SCAD. When they started talking, they quickly discovered that their treatments varied a great deal, mostly because there had been virtually no research performed on SCAD.
Outside of the online support group, Leon continued her search for answers by applying to participate in a recent WomenHeart Science and Leadership Symposium. And it was there that she met Mayo Clinic cardiologist Sharonne Hayes, M.D. Leon told Dr. Hayes about the other SCAD survivors in her online community and asked if she would consider researching the condition to help give them answers.
Finding study volunteers through social media
Since Leon already had access to the largest pool of SCAD survivors that had ever been identified, Dr. Hayes and a team of other Mayo researchers began the study process by examining whether they could use social media to find patients for their study.
They began by notifying women online who were members of the WomenHeart support group who had experienced as least one episode of SCAD. And in the span of one short week, they had enough eligible volunteers for the study.
Dr. Hayes and her research team published the results of their initial study findings in the September 2011 edition of Mayo Clinic Proceedings, calling their social media methodology a novel way for researchers to find study volunteers to help them research and investigate rare medical conditions.
Patient-initiated research
"This is a completely different research model than Mayo Clinic is used to," says Dr. Hayes. "Investigators here typically decide on the research topic themselves and then study information from current and past Mayo Clinic patients. This was truly patient-initiated research."
"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."
Dr. Hayes is now leading two additional SCAD studies at Mayo Clinic. One involves studying the cases of 200 SCAD survivors to try and identify any similarities in their condition. The second study will create a DNA bio-bank from blood samples from 400 SCAD patients and family members to help researchers find a possible genetic cause of the condition and to hopefully encourage other researchers to devote time to studying the disease.
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