Abstract
In 2011, the U.S. Department of Health and Human Services added critical congenital heart disease (CCHD), which occurs in two of every 1,000 births, to the list of conditions recommended to states for universal newborn screening (1). Without early detection, infants with CCHD are at risk for substantial morbidity and death in the first weeks and months of life (2). Based on 2007-2013 data, deaths from CCHD and other cardiac causes in infants aged <6 months significantly declined in infants born in eight states after they had fully implemented mandated newborn CCHD screening policies by June 2013 (3). CDC collaborated with the American Academy of Pediatrics (AAP) and the Association of Public Health Laboratories' Newborn Screening Technical Assistance and Evaluation Program (NewSTEPs) to update a 2015 report (4) on states' actions toward adopting and implementing policies supporting CCHD newborn screening. In 2018, all 50 states and the District of Columbia (DC) had implemented CCHD screening policies, and, with one exception, all states mandated that screening be done (California mandates that screening be offered). However, not all states had data systems in place for tracking all screening results and outcomes. Ongoing evaluation activities, which rely on screening data, could help identify program improvement opportunities and monitor the impact of early identification of CCHD.
Highlights
Data sharing with birth defects surveillance systems Data sharing exists Mechanism of data sharing Electronic linkage Shared data system Manual No data sharing
Opportunities continue for program improvement, around data collection
In 2014, among 43 states that had implemented Critical congenital heart disease (CCHD) screening policies, 24 states were collecting data, the types of data collected varied by state [4]
Summary
Actions in Support of Newborn Screening for Critical Congenital Heart Disease — United States, 2011–2018. CDC, AAP, and NewSTEPs assessed actions by states (i.e., legislation, regulations, or both) toward adoption and implementation of policies supporting CCHD newborn screening. The effect of the statute was to direct the state health department to begin the process of preparing regulations that, once issued, would require hospitals and other delivery care providers to screen for CCHD. AAP and NewSTEPs used several methods to gather and compile enactment, effective, and implementation dates of screening policies, as well as information on screening data collection and data sharing. NewSTEPs surveyed state CCHD newborn screening coordinators to assess data sharing and collaboration between birth defects surveillance programs, which track cases of CCHD, and newborn screening programs.
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