Emerging Research Directions in Adult Congenital Heart Disease A Report from an NHLBI/ACHA Working Group

Michelle Gurvitz; Kristin M. Burns; Ralph Brindis; Craig S. Broberg; Curt J. Daniels; Stephanie M.P.N. Fuller; Margaret A. Honein; Paul Khairy; Karen S. Kuehl; Michael J. Landzberg; William T. Mahle; Douglas L. Mann; Ariane Marelli; Jane W. Newburger; Gail D. Pearson; Randall C. Starling; Glenn R. Tringali; Anne Marie Valente; Joseph C. Wu; Robert M. Califf

doi:10.1016/j.jacc.2016.01.062

Emerging Research Directions in Adult Congenital Heart Disease A Report from an NHLBI/ACHA Working Group

Michelle Gurvitz, Kristin M. Burns, Ralph Brindis, Craig S. Broberg, Curt J. Daniels, Stephanie M.P.N. Fuller, Margaret A. Honein, Paul Khairy, Karen S. Kuehl, Michael J. Landzberg, William T. Mahle, Douglas L. Mann, Ariane Marelli, Jane W. Newburger, Gail D. Pearson, Randall C. Starling, Glenn R. Tringali, Anne Marie Valente, Joseph C. Wu, Robert M. Califf

Knight Cardiovascular Institute

Research output: Contribution to journal › Review article › peer-review

75 Scopus citations

Abstract

Congenital heart disease (CHD) is the most common birth defect, affecting about 0.8% of live births. Advances in recent decades have allowed >85% of children with CHD to survive to adulthood, creating a growing population of adults with CHD. Little information exists regarding survival, demographics, late outcomes, and comorbidities in this emerging group, and multiple barriers impede research in adult CHD. The National Heart, Lung, and Blood Institute and the Adult Congenital Heart Association convened a multidisciplinary working group to identify high-impact research questions in adult CHD. This report summarizes the meeting discussions in the broad areas of CHD-related heart failure, vascular disease, and multisystem complications. High-priority subtopics identified included heart failure in tetralogy of Fallot, mechanical circulatory support/transplantation, sudden cardiac death, vascular outcomes in coarctation of the aorta, late outcomes in single-ventricle disease, cognitive and psychiatric issues, and pregnancy.

Original language	English (US)
Pages (from-to)	1956-1964
Number of pages	9
Journal	Journal of the American College of Cardiology
Volume	67
Issue number	16
DOIs	https://doi.org/10.1016/j.jacc.2016.01.062
State	Published - Apr 26 2016

Keywords

congenital
heart defects
outcomes
pregnancy
single ventricle
sudden cardiac death
tetralogy of Fallot

ASJC Scopus subject areas

Cardiology and Cardiovascular Medicine

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10.1016/j.jacc.2016.01.062

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Gurvitz, M., Burns, K. M., Brindis, R., Broberg, C. S., Daniels, C. J., Fuller, S. M. P. N., Honein, M. A., Khairy, P., Kuehl, K. S., Landzberg, M. J., Mahle, W. T., Mann, D. L., Marelli, A., Newburger, J. W., Pearson, G. D., Starling, R. C., Tringali, G. R., Valente, A. M., Wu, J. C., & Califf, R. M. (2016). Emerging Research Directions in Adult Congenital Heart Disease A Report from an NHLBI/ACHA Working Group. Journal of the American College of Cardiology, 67(16), 1956-1964. https://doi.org/10.1016/j.jacc.2016.01.062

Gurvitz, M, Burns, KM, Brindis, R, Broberg, CS, Daniels, CJ, Fuller, SMPN, Honein, MA, Khairy, P, Kuehl, KS, Landzberg, MJ, Mahle, WT, Mann, DL, Marelli, A, Newburger, JW, Pearson, GD, Starling, RC, Tringali, GR, Valente, AM, Wu, JC & Califf, RM 2016, 'Emerging Research Directions in Adult Congenital Heart Disease A Report from an NHLBI/ACHA Working Group', Journal of the American College of Cardiology, vol. 67, no. 16, pp. 1956-1964. https://doi.org/10.1016/j.jacc.2016.01.062

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title = "Emerging Research Directions in Adult Congenital Heart Disease A Report from an NHLBI/ACHA Working Group",

abstract = "Congenital heart disease (CHD) is the most common birth defect, affecting about 0.8% of live births. Advances in recent decades have allowed >85% of children with CHD to survive to adulthood, creating a growing population of adults with CHD. Little information exists regarding survival, demographics, late outcomes, and comorbidities in this emerging group, and multiple barriers impede research in adult CHD. The National Heart, Lung, and Blood Institute and the Adult Congenital Heart Association convened a multidisciplinary working group to identify high-impact research questions in adult CHD. This report summarizes the meeting discussions in the broad areas of CHD-related heart failure, vascular disease, and multisystem complications. High-priority subtopics identified included heart failure in tetralogy of Fallot, mechanical circulatory support/transplantation, sudden cardiac death, vascular outcomes in coarctation of the aorta, late outcomes in single-ventricle disease, cognitive and psychiatric issues, and pregnancy.",

keywords = "congenital, heart defects, outcomes, pregnancy, single ventricle, sudden cardiac death, tetralogy of Fallot",

author = "Michelle Gurvitz and Burns, {Kristin M.} and Ralph Brindis and Broberg, {Craig S.} and Daniels, {Curt J.} and Fuller, {Stephanie M.P.N.} and Honein, {Margaret A.} and Paul Khairy and Kuehl, {Karen S.} and Landzberg, {Michael J.} and Mahle, {William T.} and Mann, {Douglas L.} and Ariane Marelli and Newburger, {Jane W.} and Pearson, {Gail D.} and Starling, {Randall C.} and Tringali, {Glenn R.} and Valente, {Anne Marie} and Wu, {Joseph C.} and Califf, {Robert M.}",

note = "Publisher Copyright: {\textcopyright} 2016 American College of Cardiology Foundation.",

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AU - Fuller, Stephanie M.P.N.

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AU - Califf, Robert M.

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AB - Congenital heart disease (CHD) is the most common birth defect, affecting about 0.8% of live births. Advances in recent decades have allowed >85% of children with CHD to survive to adulthood, creating a growing population of adults with CHD. Little information exists regarding survival, demographics, late outcomes, and comorbidities in this emerging group, and multiple barriers impede research in adult CHD. The National Heart, Lung, and Blood Institute and the Adult Congenital Heart Association convened a multidisciplinary working group to identify high-impact research questions in adult CHD. This report summarizes the meeting discussions in the broad areas of CHD-related heart failure, vascular disease, and multisystem complications. High-priority subtopics identified included heart failure in tetralogy of Fallot, mechanical circulatory support/transplantation, sudden cardiac death, vascular outcomes in coarctation of the aorta, late outcomes in single-ventricle disease, cognitive and psychiatric issues, and pregnancy.

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KW - outcomes

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KW - sudden cardiac death

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Emerging Research Directions in Adult Congenital Heart Disease A Report from an NHLBI/ACHA Working Group

Abstract

Keywords

ASJC Scopus subject areas

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