Actions in Support of Newborn Screening for Critical Congenital Heart Disease - United States, 2011-2018

Area of Science:

• Public Health
• Pediatrics
• Neonatology

Background:

• Critical congenital heart disease (CCHD) affects 2 in 1,000 births, posing significant risks of morbidity and mortality in early infancy.
• Universal newborn screening for CCHD is crucial for early detection and intervention.
• Previous data indicated a decline in CCHD-related infant deaths following screening policy implementation.

Purpose of the Study:

• To update the status of state-level adoption and implementation of policies supporting critical congenital heart disease (CCHD) newborn screening.
• To assess the progress made since the 2015 report on CCHD screening policies.
• To highlight the importance of data systems for ongoing program evaluation.

Main Methods:

• Review of state-level policies and actions regarding CCHD newborn screening.
• Analysis of data on the implementation of mandated screening policies across all 50 states and DC.
• Collaboration with key organizations like the American Academy of Pediatrics (AAP) and NewSTEPs.

Main Results:

• By 2018, all 50 states and DC had implemented CCHD screening policies, with most mandating the screening.
• A significant decline in infant deaths from CCHD was observed in states with fully implemented screening policies.
• Not all states possess robust data systems for tracking screening results and patient outcomes.

Conclusions:

• Universal CCHD newborn screening has been widely adopted across the United States.
• Effective data collection and ongoing evaluation are essential for monitoring the impact of CCHD screening and identifying areas for program improvement.
• Continued efforts are needed to ensure comprehensive data systems are in place nationwide to maximize the benefits of early CCHD detection.