TY - JOUR
T1 - Report of the National Heart, Lung, and Blood Institute Working Group on research in adult congenital heart disease
AU - Williams, Roberta G.
AU - Pearson, Gail D.
AU - Barst, Robyn J.
AU - Child, John S.
AU - Del Nido, Pedro
AU - Gersony, Welton M.
AU - Kuehl, Karen S.
AU - Landzberg, Michael J.
AU - Myerson, Merle
AU - Neish, Steven R.
AU - Sahn, David J.
AU - Verstappen, Amy
AU - Warnes, Carole A.
AU - Webb, Catherine L.
N1 - Funding Information:
The National Heart, Lung, and Blood Institute and the National Institutes of Health Office of Rare Diseases financially supported the Working Group meeting held in Bethesda in September 2004 that stimulated the preparation of this paper.
PY - 2006/2/21
Y1 - 2006/2/21
N2 - 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.
AB - 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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U2 - 10.1016/j.jacc.2005.08.074
DO - 10.1016/j.jacc.2005.08.074
M3 - Review article
C2 - 16487831
AN - SCOPUS:32644442058
SN - 0735-1097
VL - 47
SP - 701
EP - 707
JO - Journal of the American College of Cardiology
JF - Journal of the American College of Cardiology
IS - 4
ER -