Spontaneous coronary artery dissection: a disease-specific, social networking community-initiated study

OBJECTIVE: To develop and assess the feasibility of a novel method for identification, recruitment, and retrospective and prospective evaluation of patients with rare conditions.PATIENTS AND METHODS: This pilot study is a novel example of “patient-initiated research.” After being approached by several members of an international disease-specific support group on a social networking site, we used it to identify patients who had been diagnosed as having at least 1 episode of spontaneous coronary artery dissection and recruited them to participate in a clinical investigation of their condition. Medical records were collected and reviewed, the original diagnosis was independently confirmed by review of imaging studies, and health status (both interval and current) was assessed via specially designed questionnaires and validated assessment tools.RESULTS: Recruitment of all 12 participants was complete within 1 week of institutional review board approval (March 18, 2010). Data collection was completed November 18, 2010. All participants completed the study questionnaires and provided the required medical records and coronary angiograms and ancillary imaging data.CONCLUSION: This study involving patients with spontaneous coronary artery dissection demonstrates the feasibility of and is a successful model for developing a “virtual” multicenter disease registry through disease-specific social media networks to better characterize an uncommon condition. This study is a prime example of patient-initiated research that could be used by other health care professionals and institutions.From a patient''s perspective, being diagnosed as having a rare condition is challenging. Frustration regarding the treating physicians'' lack of knowledge about and experience with their specific condition is often compounded by repeated reminders regarding its obscurity. Patients grow tired of hearing how little is known and how “unique” and “unusual” they are, and those with sometimes fatal conditions are often frightened by the seeming “shotgun” or inconsistent approach to management and the explicit and implicit messages that their health care professionals have “no data” to guide treatment recommendations. Patients with rare diseases therefore increasingly seek answers, medical information, and peer support on the Internet. Our study aimed to test the feasibility of collecting retrospective and prospective clinical data and original diagnostic imaging studies from persons self-identified with spontaneous coronary artery dissection (SCAD) in an Internet-based heart disease support network.First described in 1931, SCAD is a rare, poorly understood cause of myocardial infarction. It occurs in relatively young persons¹ and represents a tiny proportion (0.07%-1.1%) of patients undergoing angiography in most registries and series.^2-4 Among reported case series ranging from 3 to 47 cases, there is an approximate 2:1 female predominance. About one third of the cases in women occur in the peripartum period. SCAD may present as sudden death,⁵ angina, or myocardial infarction and may be responsible for as many as 1 of 10 episodes of acute coronary syndrome in women younger than 50 years.² Despite hundreds of published case reports and small case series,^2-4,6-13 to our knowledge only 1 SCAD patient registry has been developed,⁵ and no data from multicenter clinical trials are available to guide treatment. Because of the paucity of clinical data and inconsistent follow-up and reporting, the prevalence, recurrence rate, and long-term prognosis after SCAD remain uncertain,^5,14-18 and the underlying etiology and optimal short- and long-term management are ambiguous.^18,19 As with other poorly understood conditions, many survivors are highly active in seeking information from any available source and seek to learn from experiences of others similarly affected.