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

Michelle Gurvitz1, Kristin M Burns2, Ralph Brindis3

  • 1Harvard Medical School, Boston Adult Congenital Heart and Pulmonary Hypertension Program, Boston Children's Hospital and Brigham and Women's Hospital, Boston, Massachusetts.

Journal of the American College of Cardiology
|April 23, 2016
PubMed

Insights

Advances in congenital heart disease (CHD) care allow more children to reach adulthood. This working group identified key research questions for adult CHD, focusing on heart failure, vascular disease, and multisystem complications.

Area of Science:

  • Cardiology
  • Adult Congenital Heart Disease Research

Background:

  • Congenital heart disease (CHD) is the most common birth defect, impacting 0.8% of newborns.
  • Over 85% of children with CHD now survive to adulthood, creating a growing adult CHD population.
  • Limited data exists on survival, demographics, late outcomes, and comorbidities in adults with CHD.

Purpose of the Study:

  • To identify high-impact research questions in adult congenital heart disease (CHD).
  • To address knowledge gaps in the emerging field of adult CHD.
  • To guide future research priorities in adult CHD.

Main Methods:

  • A multidisciplinary working group was convened by the National Heart, Lung, and Blood Institute and the Adult Congenital Heart Association.
  • Discussions focused on identifying critical research needs in adult CHD.
  • Key areas for research were broadly categorized.

Main Results:

  • Identified high-priority research areas include CHD-related heart failure, vascular disease, and multisystem complications.
  • Specific subtopics include heart failure in tetralogy of Fallot, mechanical circulatory support, sudden cardiac death, and coarctation of the aorta outcomes.
  • Other critical areas include single-ventricle disease late outcomes, cognitive/psychiatric issues, and pregnancy in adults with CHD.

Conclusions:

  • Urgent research is needed to understand and manage the complex health needs of the growing adult CHD population.
  • Future research should prioritize understanding long-term outcomes and specific complications in adults with various forms of CHD.
  • Addressing these research gaps is crucial for improving the quality of life and survival for adults with CHD.

Keywords:
congenitalheart defectsoutcomespregnancysingle ventriclesudden cardiac deathtetralogy of Fallot

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