Improving the Health of People Across the Lifespan: NCBDDD’s Congenital Heart Defects Tracking and Research
NCBDDD is committed to helping individuals with congenital heart defects in each phase of life, through public health tracking, research, prevention, and intervention.
What’s The Problem?
Congenital heart defects are common, costly, and critical conditions that affect people throughout their lives.
- Every 15 minutes, a baby is born with a congenital heart defect in the United States.
- In 2019, hospital costs exceeded $9.8 billion to care for children with congenital heart defects.
- More than 2.4 million U.S. children and adults are living with congenital heart defects.
- Over 1 in 6 adults with a congenital heart defect have physical, educational, or occupational limitations.
What’s the Solution?
NCBDDD is learning more about congenital heart defects through public health tracking and research to inform interventions that could improve the lives of those living with these conditions.
- NCBDDD has worked with programs to evaluate and conduct newborn screening for critical congenital heart defects and conducted a cost-effectiveness analysis. NCBDDD scientists estimate that nationwide critical congenital heart defects screening could save at least 120 babies each year.
- NCBDDD funds 10 state programs to track birth defects, including congenital heart defects. Several sites also link data on timing and method of detection of critical congenital heart defects, including newborn pulse-oximetry screening results, with birth defects tracking data. Based on state data, we know that about 1 in every 500 U.S. babies are born with a critical congenital heart defect each year.
- NCBDDD funds several research centers across the nation to help understand the causes of birth defects, including congenital heart defects. For example, we found a 2-fold increased risk for hypoplastic left heart syndrome in babies of mothers who took opioid pain medications early in pregnancy.
- NCBDDD conducted CH STRONG, a survey of over 1,600 adults living with congenital heart defects, and found that 4 in 10 has a disability.
- NCBDDD funds CHD STAR, a 7-site project to track children and adults with heart defects, to assess survival, healthcare use, and longer-term outcomes.
- NCBDDD funds CH STRONG-KIDS, a 3-site project that will survey parents and caregivers of children with CHDs about their child’s healthcare utilization, barriers to care, quality of life, social and educational outcomes, and transition of care from childhood to adulthood as well as needs and experiences of the caregivers.