Congenital Heart Disease Research and Surveillance: Current Initiatives and Identified Gaps

Medical care and survival for people with congenital heart disease (CHD) is continually improving.

People with critical CHD who may have previously died in infancy are now living well into adulthood. Weare now seeing the first cohort of individuals with critical CHD entering their 5th decade or older. This leaves us in uncharted territory with limited understanding of long-term outcomes of CHD. Evidence-based interventions to improve care still need to be developed. Surgical repair of congenital heart disease early in life does not mean cure of congenital heart disease, individuals with CHD require lifelong medical care. ¹ A critical need for CHD research and surveillance remains.

The Congenital Heart Public Health Consortium and patient advocacy organizations serve as vital partners, bridging knowledge gaps and championing initiatives for accessible, comprehensive care throughout life for individuals with CHD. This guide provides information regarding the gaps in current knowledge and opportunities for new and continued CHD research and surveillance.²

The table below provides: 1) Timepoints across the lifespan affected by specific critical needs; 2) A summary of knowledge gaps in research; 3) Potential avenues for filling those gaps.