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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.
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      Linked Article

      • Electronic Communication and Medical Research: Beyond the Record
        Mayo Clinic ProceedingsVol. 86Issue 9
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          In the current issue of Mayo Clinic Proceedings, Tweet et al1 describe a novel solution to a perpetual problem that clinical researchers must address: How can researchers effectively and ethically identify and recruit adequate numbers of research participants, particularly if the research protocol involves participants having a rare condition? Absent such recruitment, a study will fail.
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