Emerging Research Directions in Adult Congenital Heart Disease: A Report From an NHLBI/ACHA Working Group.
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.
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.
Michelle
M
Gurvitz
National Heart, Lung, and Blood Institute, Bethesda, Maryland.
Kristin M
KM
Burns
University of California, San Francisco, California.
Ralph
R
Brindis
Oregon Health and Science University, Portland, Oregon.
Craig S
CS
Broberg
The Ohio State University, Columbus, Ohio.
Curt J
CJ
Daniels
The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.
Stephanie M P N
SM
Fuller
Centers for Disease Control and Prevention, Atlanta, Georgia.
Margaret A
MA
Honein
Universite de Montreal, Montreal, Quebec, Canada.
Paul
P
Khairy
Children's National Medical Center, Washington, DC.
Karen S
KS
Kuehl
Harvard Medical School, Boston Adult Congenital Heart and Pulmonary Hypertension Program, Boston Children's Hospital and Brigham and Women's Hospital, Boston, Massachusetts.
Michael J
MJ
Landzberg
Emory University School of Medicine, Atlanta, Georgia.
William T
WT
Mahle
Washington University in St. Louis, St. Louis, Missouri.
Douglas L
DL
Mann
McGill University Health Center, Montreal, Quebec, Canada.
Ariane
A
Marelli
Harvard Medical School, Boston Children's Hospital, Boston, Massachusetts.
Jane W
JW
Newburger
National Heart, Lung, and Blood Institute, Bethesda, Maryland.
Gail D
GD
Pearson
Cleveland Clinic, Cleveland, Ohio.
Randall C
RC
Starling
Adult Congenital Heart Association, Philadelphia, Pennsylvania.
Glenn R
GR
Tringali
Harvard Medical School, Boston Adult Congenital Heart and Pulmonary Hypertension Program, Boston Children's Hospital and Brigham and Women's Hospital, Boston, Massachusetts.
Anne Marie
AM
Valente
Stanford University School of Medicine, Palo Alto, California.
Joseph C
JC
Wu
Duke University, Durham, North Carolina.
Robert M
RM
Califf
D000328:Adult; D000367:Age Factors; D001017:Aortic Coarctation / Q000175:diagnosis / Q000401:mortality / Q000601:surgery; D002423:Cause of Death; D003226:Congresses as Topic; D005260:Female; D006330:Heart Defects, Congenital / Q000175:diagnosis / Q000401:mortality* / Q000628:therapy*; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D054555:National Heart, Lung, and Blood Institute (U.S.) / Q000592:standards; D017410:Practice Guidelines as Topic; D011247:Pregnancy; D011379:Prognosis; D036301:Qualitative Research; D018570:Risk Assessment; D012737:Sex Factors; D016019:Survival Analysis; D013771:Tetralogy of Fallot / Q000175:diagnosis / Q000401:mortality / Q000601:surgery; D014481:United States
congenital; heart defects; outcomes; pregnancy; single ventricle; sudden cardiac death; tetralogy of Fallot