Natural history study of congenital heart defects

O’Fallon, W. Michael; Rings, Linda; Gonzalez, Rebecca; Burnett, Janice; Golda, Cathleen; Hayes, G. H.; M, Neveu; O'Neill, Linda; Zemek, Rina

doi:10.1016/0197-2456(87)90014-6

Cited by 7 publications

(5 citation statements)

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“…Twenty-seven percent of these patients had not had a single evaluation beyond their 18th birthday. In the Natural History Study, 40% of patients with aortic stenosis, pulmonary stenosis, and ventricular septal defect had not had a cardiac examination in more than 10 years (14). In a general population of patients who have not been evaluated and followed up as rigorously as in the Natural History study, this rate is likely to be even higher.…”

Section: Key Scientific Questionsmentioning

confidence: 93%

Report of the National Heart, Lung, and Blood Institute Working Group on Research in Adult Congenital Heart Disease

Williams

Pearson

Barst

et al. 2006

Journal of the American College of Cardiology

174

102

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The Working Group on research in adult congenital heart disease (ACHD) was convened in September 2004 under the sponsorship of National Heart, Lung, and Blood Institute (NHLBI) and the Office of Rare Diseases, National Institutes of Health, Department of Health and Human Services, to make recommendations on research needs. The purpose of the Working Group was to advise the NHLBI on the current state of the science in ACHD and barriers to optimal clinical care, and to make specific recommendations for overcoming those barriers. The members of the Working Group were chosen to provide expert input on a broad range of research issues from both scientific and lay perspectives. The Working Group reviewed data on the epidemiology of ACHD, long-term outcomes of complex cardiovascular malformations, issues in assessing morphology and function with current imaging techniques, surgical and catheter-based interventions, management of related conditions including pregnancy and arrhythmias, quality of life, and informatics. After research and training barriers were discussed, the Working Group recommended outreach and educational programs for adults with congenital heart disease, a network of specialized adult congenital heart disease regional centers, technology development to support advances in imaging and modeling of abnormal structure and function, and a consensus on appropriate training for physicians to provide care for adults with congenital heart disease.

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Section: Key Scientific Questionsmentioning

confidence: 93%

Report of the National Heart, Lung, and Blood Institute Working Group on Research in Adult Congenital Heart Disease

Williams

Pearson

Barst

et al. 2006

Journal of the American College of Cardiology

174

102

View full text Add to dashboard Cite

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“…Congenital heart defects (CHD) affect nearly 1% of children born in the United States (1) who, without interventions, experience significant morbidity and mortality as described by the first and second natural history studies (2,3). Surgery for CHD dramatically changed the outcomes for patients with even complex defects, and surgical mortality has significantly decreased over time (4–8).…”

Section: Introductionmentioning

confidence: 99%

Trends in Long-Term Mortality After Congenital Heart Surgery

Spector

Menk

Knight

et al. 2018

Journal of the American College of Cardiology

168

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“…1 and 2, the Baltimore-Washington Infant Study, and the New England Regional Infant Cardiac Program are but some of the important summaries of clinical outcomes addressing both specific lesions and outcomes of infants with congenital heart disease in disparate areas of the United States. [155][156][157][158][159][160] Other strategies to reduce mortality and to enhance cohort inclusion are regionalization and the development of standards for practice. [161][162][163][164] There is increasing evidence that regionalization can reduce surgical mortality and thus enhance outcomes.…”

Section: Outcome Analysis In Congenital Heart Diseasementioning

confidence: 99%