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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.
AuthorsMichelle 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
JournalJournal of the American College of Cardiology (J Am Coll Cardiol) Vol. 67 Issue 16 Pg. 1956-64 (Apr 26 2016) ISSN: 1558-3597 [Electronic] United States
PMID27102511 (Publication Type: Journal Article, Research Support, N.I.H., Extramural, Research Support, Non-U.S. Gov't, Review)
CopyrightCopyright © 2016 American College of Cardiology Foundation. Published by Elsevier Inc. All rights reserved.
Topics
  • Adult
  • Age Factors
  • Aortic Coarctation (diagnosis, mortality, surgery)
  • Cause of Death
  • Congresses as Topic
  • Female
  • Heart Defects, Congenital (diagnosis, mortality, therapy)
  • Humans
  • Infant
  • Infant, Newborn
  • Male
  • National Heart, Lung, and Blood Institute (U.S.) (standards)
  • Practice Guidelines as Topic
  • Pregnancy
  • Prognosis
  • Qualitative Research
  • Risk Assessment
  • Sex Factors
  • Survival Analysis
  • Tetralogy of Fallot (diagnosis, mortality, surgery)
  • United States

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