Spontaneous coronary artery dissection

A disease-specific, social networking community-initiated study

Marysia Tweet, Rajiv Gulati, Lee A. Aase, Sharonne N. Hayes

Research output: Contribution to journalArticle

65 Citations (Scopus)

Abstract

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.

Original languageEnglish (US)
Pages (from-to)845-850
Number of pages6
JournalMayo Clinic Proceedings
Volume86
Issue number9
DOIs
StatePublished - 2011

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Social Networking
Medical Records
Social Media
Self-Help Groups
Research Ethics Committees
Research
Social Support
Health Status
Registries
Angiography
Spontaneous Coronary Artery Dissection
Delivery of Health Care

ASJC Scopus subject areas

  • Medicine(all)

Cite this

Spontaneous coronary artery dissection : A disease-specific, social networking community-initiated study. / Tweet, Marysia; Gulati, Rajiv; Aase, Lee A.; Hayes, Sharonne N.

In: Mayo Clinic Proceedings, Vol. 86, No. 9, 2011, p. 845-850.

Research output: Contribution to journalArticle

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