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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© 2011 Mayo Foundation for Medical Education and Research. Published by Elsevier Inc. All rights reserved.
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- Electronic Communication and Medical Research: Beyond the RecordMayo Clinic ProceedingsVol. 86Issue 9
- PreviewIn 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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