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

Overview

Journal J Am Coll Cardiol

Specialty Cardiology & Vascular Diseases

Date 2016 Apr 23

PMID 27102511

Citations 32

Authors

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

Affiliations

Soon will be listed here.

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.

Citing Articles

Increased prevalence of cardiac and non-cardiac chronic morbidity among adults with congenital heart disease.

Portal D, Hirsch R, Benderly M Int J Cardiol Congenit Heart Dis. 2024; 7:100314.

PMID: 39712257 PMC: 11658408. DOI: 10.1016/j.ijcchd.2021.100314.

Patient-Reported Outcomes Among Adults With Congenital Heart Disease in the Congenital Heart Initiative Registry.

Leezer S, Mehta R, Agarwal A, Saraf S, Messmer M, Phillippi R JAMA Netw Open. 2024; 7(10):e2439629.

PMID: 39412804 PMC: 11581669. DOI: 10.1001/jamanetworkopen.2024.39629.

QRS fragmentation versus QRS prolongation in predicting right ventricular enlargement and dysfunction in children and adults with repaired Tetralogy of Fallot.

Gaydos S, Hlavacek A, Evenhouse S, Strelow J, Chowdhury S, Jackson L Int J Cardiol Congenit Heart Dis. 2024; 13.

PMID: 39319063 PMC: 11421833. DOI: 10.1016/j.ijcchd.2022.100408.

Rationale and design of CHD PULSE: Congenital Heart Disease Project to Understand Lifelong Survivor Experience.

Oster M, Yang Y, Shi C, Anderson S, Knight J, Spector L Am Heart J. 2024; 278:150-160.

PMID: 39299630 PMC: 11806948. DOI: 10.1016/j.ahj.2024.09.003.

"We have dealt with so much. There's more coming?": Improving Knowledge About Brain Health in Adults Living With Congenital Heart Disease.

De Sousa I, Dizonno V, LeComte K, Carr A, El Kalza Y, Shymka M CJC Pediatr Congenit Heart Dis. 2024; 3(1):1-10.

PMID: 38544881 PMC: 10964265. DOI: 10.1016/j.cjcpc.2023.10.010.

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