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

Jill Glidewell, MSN, MPH; Scott D. Grosse, PhD; Tiffany Riehle-Colarusso, MD; Nelangi Pinto, MD; Jeff Hudson, MA; Rachel Daskalov, MHA; Amy Gaviglio, MS; Erin Darby, MPH; Sikha Singh, MHS; Marci Sontag, PhD

Disclosures

Morbidity and Mortality Weekly Report. 2019;68(5):107-111. 

In This Article

Discussion

Policies for newborn screening of CCHD were gradually adopted in all U.S. states and DC from 2011 through 2018, thus facilitating improved survival of affected infants. Newborn screening mandates for CCHD have been found to save lives;[3] however, opportunities continue for program improvement, particularly around data collection. Despite the implementation of CCHD screening policies in all jurisdictions, data collection efforts have lagged. In 2014, among 43 states that had implemented CCHD screening policies, 24 states were collecting data, although the types of data collected varied by state.[4] By 2017, among 49 states with CCHD screening policies implemented, 41 were collecting data. Jurisdictional level data collection practices vary widely based upon state statute, financial and staff member resources, and capabilities to collect data.[8] Completeness of data collection is important for surveillance, monitoring of outcomes, process improvement, and evaluation of state CCHD screening programs.[2,4–6,8–10] States use screening algorithms as step-by-step guides for screening and determination of pass or fail and for the assessment of false positive and false negative cases.[6,9] Evaluation and potential refinement of screening algorithms rely upon individual-level screening and outcome data.

Another opportunity for CCHD screening program evaluation and improvement lies in fostering collaborations between the two public health programs most invested in CCHD screening (newborn screening programs and birth defects surveillance programs). Because of the role of birth defects surveillance programs in monitoring new cases of CCHD, regardless of mode of detection, these programs have the ability to aid in evaluation of CCHD screening by assessing mortality, outcomes, and service utilization by children with CCHD.[8] Integrating population-level screening and follow-up data from a CCHD newborn screening program with the targeted oversight of newly identified CCHD cases by birth defects surveillance programs is integral to establishing and maintaining a robust surveillance system. Ultimately, this integration can facilitate evaluation of the complete CCHD screening process, including the effectiveness of and adherence to the screening algorithm, screening sensitivity and specificity, and assessment of outcomes and needs of affected infants and their families. In Minnesota, for example, staff members of the CCHD newborn screening and birth defects surveillance program work together and share data regularly. Birth defects program and follow-up staff members have access to the same data system that collects individual-level CCHD screening data, facilitating rapid reporting of infants identified via CCHD screening to the birth defects surveillance program for diagnostic confirmation and connection to resources. Cases reported to the birth defects surveillance program also can be assessed easily for screening status and results, and previously undetected cases can be documented in the system.

The findings in this report are subject to at least two limitations. First, because of difficulty obtaining exact dates and interpretation of language in jurisdictions' statutes and regulations, slight variability in the legislation, regulations, and guidelines presented might occur. Second, although all 51 jurisdictions completed the survey, the responses were reported by the jurisdictions' CCHD screening contact person and not independently verified.

Newborn screening for CCHD in the United States has been implemented nationwide, with numerous infants' lives being saved or improved as a result. Improved data collection practices and standardization across all jurisdictions could increase effective monitoring and evaluation of CCHD screening. Ongoing evaluation remains important to ensure the best possible outcomes.

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