ArticleMayo Clinic proceedings2011
Spontaneous coronary artery dissection: a disease-specific, social networking community-initiated study.
Article in Mayo Clinic proceedings, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to 2 registered trials, which are not on this map. Cited by 50 papers, 3 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Genetic Investigations in Spontaneous Coronary Artery Dissection (SCAD)
The "Virtual" Multicenter Spontaneous Coronary Artery Dissection (SCAD) Registry
Who cites it
50 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Opportunities and pitfalls of social media research in rare genetic diseases: a systematic review.Genetics in medicine : official journal of the American College of Medical Genetics · 2021Pooled it
- Spontaneous Coronary Artery Dissection: Current State of the Science: A Scientific Statement From the American Heart Association.Circulation · 2018Guideline
- Patient and service user engagement in research: a systematic review and synthesized framework.Health expectations : an international journal of public participation in health care and health policy · 2015Pooled it
- A/B design testing of a clinical trial recruitment website: A pilot study to enhance the enrollment of older adults.Contemporary clinical trials · 2021Trial
- A Contemporary Review of Spontaneous Coronary Artery Dissection: CLINICAL CARE, CARDIAC REHABILITATION, AND FUTURE DIRECTIONS.Journal of cardiopulmonary rehabilitation and prevention · 2026Review
- Specialized clinics for patients with spontaneous coronary artery dissection.International journal of cardiology. Heart & vasculature · 2024Article
- Early Effects of the COVID-19 Pandemic on Patients in a Virtual Multicenter Spontaneous Coronary Artery Dissection (SCAD) Registry.CJC open · 2024Article
- Spontaneous Coronary Artery Dissection: A Case Series and Review of the Literature.Journal of community hospital internal medicine perspectives · 2024Review
- Patients' Perspectives, Experiences, and Concerns With Perianal Fistulae: Insights From Online Targeted-Disease Forums.Crohn's & colitis 360 · 2023Article
- Social Media and Cardiovascular Health: Implications for Women.Current atherosclerosis reports · 2022Review
- Stakeholders' views on drug development: the congenital disorders of glycosylation community perspective.Orphanet journal of rare diseases · 2022Article
- The presentation of spontaneous coronary artery dissection in the emergency department: Signs and symptoms in an unsuspecting population.Academic emergency medicine : official journal of the Society for Academic Emergency Medicine · 2022Article
- The road to successful people-centric research in rare diseases: the web-based case study of the Immunology and Congenital Disorders of Glycosylation questionnaire (ImmunoCDGQ).Orphanet journal of rare diseases · 2022Article
- Epidemiology of cardiovascular disease in women - A long way from our "founding fathers".American heart journal plus : cardiology research and practice · 2022Article
- Spontaneous coronary dissection should not be ignored in patients with chest pain in autosomal dominant polycystic kidney disease: A case report.World journal of clinical cases · 2021Article
- Physical Activity and Exercise Patterns After Spontaneous Coronary Artery Dissection: Insights From a Large Multinational Registry.Frontiers in cardiovascular medicine · 2021Article
- Recurrent acute coronary syndrome in a patient with spontaneous coronary artery dissection and fibromuscular dysplasia.BMJ case reports · 2020Article
- Association of Pregnancy With Recurrence of Spontaneous Coronary Artery Dissection Among Women With Prior Coronary Artery Dissection.JAMA network open · 2020Article
- Spontaneous Coronary Artery Dissection: Latest Developments and New Frontiers.Current atherosclerosis reports · 2020Review
- Variations in follow-up after atrial fibrillation ablation.Journal of the American Association of Nurse Practitioners · 2020Article
Corrections and comments
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Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveTo develop and assess the feasibility of a novel method for identification, recruitment, and retrospective and prospective evaluation of patients with rare conditions. PATIENTS AND
methodsThis 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.
resultsRecruitment 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.
conclusionThis 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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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.