Report of the National Heart, Lung, and Blood Institute Working Group on research in adult congenital heart disease

Roberta G. Williams, Gail D. Pearson, Robyn J. Barst, John S. Child, Pedro Del Nido, Welton M. Gersony, Karen S. Kuehl, Michael J. Landzberg, Merle Myerson, Steven Neish, David J. Sahn, Amy Verstappen, Carole A. Warnes, Catherine L. Webb

Research output: Contribution to journalArticle

130 Citations (Scopus)

Abstract

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.

Original languageEnglish (US)
Pages (from-to)701-707
Number of pages7
JournalJournal of the American College of Cardiology
Volume47
Issue number4
DOIs
StatePublished - Feb 21 2006
Externally publishedYes

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National Heart, Lung, and Blood Institute (U.S.)
Heart Diseases
Research
United States Dept. of Health and Human Services
Informatics
National Institutes of Health (U.S.)
Rare Diseases
Cardiac Arrhythmias
Epidemiology
Catheters
Quality of Life
Physicians
Pregnancy

ASJC Scopus subject areas

  • Nursing(all)

Cite this

Williams, R. G., Pearson, G. D., Barst, R. J., Child, J. S., Del Nido, P., Gersony, W. M., ... Webb, C. L. (2006). Report of the National Heart, Lung, and Blood Institute Working Group on research in adult congenital heart disease. Journal of the American College of Cardiology, 47(4), 701-707. https://doi.org/10.1016/j.jacc.2005.08.074

Report of the National Heart, Lung, and Blood Institute Working Group on research in adult congenital heart disease. / Williams, Roberta G.; Pearson, Gail D.; Barst, Robyn J.; Child, John S.; Del Nido, Pedro; Gersony, Welton M.; Kuehl, Karen S.; Landzberg, Michael J.; Myerson, Merle; Neish, Steven; Sahn, David J.; Verstappen, Amy; Warnes, Carole A.; Webb, Catherine L.

In: Journal of the American College of Cardiology, Vol. 47, No. 4, 21.02.2006, p. 701-707.

Research output: Contribution to journalArticle

Williams, RG, Pearson, GD, Barst, RJ, Child, JS, Del Nido, P, Gersony, WM, Kuehl, KS, Landzberg, MJ, Myerson, M, Neish, S, Sahn, DJ, Verstappen, A, Warnes, CA & Webb, CL 2006, 'Report of the National Heart, Lung, and Blood Institute Working Group on research in adult congenital heart disease', Journal of the American College of Cardiology, vol. 47, no. 4, pp. 701-707. https://doi.org/10.1016/j.jacc.2005.08.074
Williams, Roberta G. ; Pearson, Gail D. ; Barst, Robyn J. ; Child, John S. ; Del Nido, Pedro ; Gersony, Welton M. ; Kuehl, Karen S. ; Landzberg, Michael J. ; Myerson, Merle ; Neish, Steven ; Sahn, David J. ; Verstappen, Amy ; Warnes, Carole A. ; Webb, Catherine L. / Report of the National Heart, Lung, and Blood Institute Working Group on research in adult congenital heart disease. In: Journal of the American College of Cardiology. 2006 ; Vol. 47, No. 4. pp. 701-707.
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