Mayo Clinic Proceedings Home

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


      To develop and assess the feasibility of a novel method for identification, recruitment, and retrospective and prospective evaluation of patients with rare conditions.


      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.


      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.


      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.
      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'


      Subscribe to Mayo Clinic Proceedings
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect


        • Pretty HC
        Dissecting aneurysm of coronary artery in a woman aged 42: rupture.
        Br Med J. 1931; 1: 667
        • Vanzetto G
        • Berger-Coz E
        • Barone-Rochette G
        • et al.
        Prevalence, therapeutic management and medium-term prognosis of spontaneous coronary artery dissection: results from a database of 11,605 patients.
        Eur J Cardiothorac Surg. 2009; 35: 250-254
        • Mortensen KH
        • Thuesen L
        • Kristensen IB
        • Christiansen EH
        Spontaneous coronary artery dissection: a Western Denmark Heart Registry study.
        Catheter Cardiovasc Interv. 2009; 74: 710-717
        • Hering D
        • Piper C
        • Hohmann C
        • Schultheiss HP
        • Horstkotte D
        Prospective study of the incidence, pathogenesis and therapy of spontaneous, by coronary angiography diagnosed coronary artery dissection [article in German].
        Z Kardiol. 1998; 87: 961-970
        • Fontanelli A
        • Olivari Z
        • La Vecchia L
        • DISCOVERY Investigators
        • et al.
        Spontaneous dissections of coronary arteries and acute coronary syndromes: rationale and design of the DISCOVERY, a multicenter prospective registry with a case-control group.
        J Cardiovasc Med (Hagerstown). 2009; 10: 94-99
        • Motreff P
        • Souteyrand G
        • Dauphin C
        • Eschalier R
        • Cassagnes J
        • Lusson JR
        Management of spontaneous coronary artery dissection: review of the literature and discussion based on a series of 12 young women with acute coronary syndrome.
        Cardiology. 2010; 115: 10-18
        • Jorgensen MB
        • Aharonian V
        • Mansukhani P
        • Mahrer PR
        Spontaneous coronary dissection: a cluster of cases with this rare finding.
        Am Heart J. 1994; 127: 1382-1387
        • DeMaio Jr, SJ
        • Kinsella SH
        • Silverman ME
        Clinical course and long-term prognosis of spontaneous coronary artery dissection.
        Am J Cardiol. 1989; 64: 471-474
        • Maeder M
        • Ammann P
        • Angehrn W
        • Rickli H
        Idiopathic spontaneous coronary artery dissection: incidence, diagnosis and treatment.
        Int J Cardiol. 2005; 101: 363-369
        • Zampieri P
        • Aggio S
        • Roncon L
        • et al.
        Follow up after spontaneous coronary artery dissection: a report of five cases.
        Heart. 1996; 75: 206-209
        • Pasalodos Pita J
        • Vasquez Gonzalez N
        • Perez Alvarez L
        • Vasquez Rodriguez JM
        • Castro Bieras A
        Spontaneous coronary artery dissection.
        Cathet Cardiovasc Diagn. 1994; 32: 27-32
        • Nishikawa H
        • Nakanishi S
        • Nishiyama S
        • Nishimura S
        • Seki A
        • Yamaguchi H
        Primary coronary artery dissection observed at coronary angiography.
        Am J Cardiol. 1988; 61: 645-648
        • Celik SK
        • Sagcan A
        • Altintig A
        • Yuksel M
        • Akin M
        • Kultursay H
        Primary spontaneous coronary artery dissections in atherosclerotic patients: report of nine cases with review of the pertinent literature.
        Eur J Cardiothorac Surg. 2001; 20: 573-576
        • Thompson EA
        • Ferraris S
        • Gress T
        • Ferraris V
        Gender differences and predictors of mortality in spontaneous coronary artery dissection: a review of reported cases.
        J Invasive Cardiol. 2005; 17: 59-61
        • Kamran M
        • Guptan A
        • Bogal M
        Spontaneous coronary artery dissection: case series and review.
        J Invasive Cardiol. 2008; 20: 553-559
        • Basile C
        • Lucarelli K
        • Langialonga T
        Spontaneous coronary artery dissection: one more extrarenal manifestation of autosomal dominant polycystic kidney disease?.
        J Nephrol. 2009; 22: 414-416
        • Borczuk AC
        • van Hoeven KH
        • Factor SM
        Review and hypothesis: the eosinophil and peripartum heart disease (myocarditis and coronary artery dissection): coincidence or pathogenetic significance?.
        Cardiovasc Res. 1997; 33: 527-532
        • Shamloo BK
        • Chintala RS
        • Nasur A
        • et al.
        Spontaneous coronary artery dissection: aggressive vs. conservative therapy.
        J Invasive Cardiol. 2010; 22: 222-228
        • Hoye A
        Spontaneous coronary artery dissection: time for a concerted effort to better understand this rare condition.
        J Invasive Cardiol. 2010; 22: 229-230
      1. [email protected] University. Haiti: the 2010 earthquake in Haiti.
        (Accessed July 6, 2011.)
        • Freifeld CC
        • Chunara R
        • Mekaru SR
        • et al.
        Participatory epidemiology: use of mobile phones for community-based health reporting.
        PLoS Med. 2010; 7: e1000376
        • Atkinson NL
        • Saperstein SL
        • Pleis J
        Using the internet for health-related activities: findings from a national probability sample.
        J Med Internet Res. 2009; 11: e4

      Linked Article

      • Electronic Communication and Medical Research: Beyond the Record
        Mayo Clinic ProceedingsVol. 86Issue 9
        • Preview
          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.
        • Full-Text
        • PDF