Spontaneous Coronary Artery Dissection: A Disease-Specific, Social Networking Community-Initiated Study

• Published in: Mayo Clinic proceedings 2011-09, Vol.86 (9), p.845-850
• Main Authors: Tweet, Marysia S., MD, Gulati, Rajiv, MD, PhD, Aase, Lee A., BS, Hayes, Sharonne N., MD
• Format: Article
• Language: English
• Subjects: Aged; Aneurysm, Dissecting - epidemiology; Biological and medical sciences; Cardiology. Vascular system; Community Networks; Coronary Aneurysm - epidemiology; Coronary heart disease; Feasibility Studies; General aspects; Heart; Humans; Internal Medicine; Medical research; Medical sciences; Medicine, Experimental; Middle Aged; Miscellaneous; Needs Assessment - statistics & numerical data; Online social networks; Original; Patient Acceptance of Health Care - statistics & numerical data; Patient Participation - statistics & numerical data; Patient Selection; Pilot Projects; Practice; Public health. Hygiene; Public health. Hygiene-occupational medicine; Research Design - standards; Social Support
• ISSN: 0025-6196; 1942-5546
• DOI: 10.4065/mcp.2011.0312

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.