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J Am Coll Cardiol. 2016 Apr 26;67(16):1956-64. doi: 10.1016/j.jacc.2016.01.062.

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

Author information

1
Harvard Medical School, Boston Adult Congenital Heart and Pulmonary Hypertension Program, Boston Children's Hospital and Brigham and Women's Hospital, Boston, Massachusetts. Electronic address: Michelle.gurvitz@cardio.chboston.org.
2
National Heart, Lung, and Blood Institute, Bethesda, Maryland.
3
University of California, San Francisco, California.
4
Oregon Health and Science University, Portland, Oregon.
5
The Ohio State University, Columbus, Ohio.
6
The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.
7
Centers for Disease Control and Prevention, Atlanta, Georgia.
8
Universite de Montreal, Montreal, Quebec, Canada.
9
Children's National Medical Center, Washington, DC.
10
Harvard Medical School, Boston Adult Congenital Heart and Pulmonary Hypertension Program, Boston Children's Hospital and Brigham and Women's Hospital, Boston, Massachusetts.
11
Emory University School of Medicine, Atlanta, Georgia.
12
Washington University in St. Louis, St. Louis, Missouri.
13
McGill University Health Center, Montreal, Quebec, Canada.
14
Harvard Medical School, Boston Children's Hospital, Boston, Massachusetts.
15
Cleveland Clinic, Cleveland, Ohio.
16
Adult Congenital Heart Association, Philadelphia, Pennsylvania.
17
Stanford University School of Medicine, Palo Alto, California.
18
Duke University, Durham, North Carolina.

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

PMID:
27102511
PMCID:
PMC4846980
DOI:
10.1016/j.jacc.2016.01.062
[Indexed for MEDLINE]
Free PMC Article

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