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Expanding the Massachusetts Birth Defects Monitoring Program to include additional pregnancy outcomes: Programmatic
Amy Fothergill1,2, Rebecca F Liberman3, Eirini Nestoridi3
1National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia, USA.
Insights
Including other pregnancy losses in birth defect surveillance significantly increases prevalence estimates, especially for neural tube defects and trisomies. This enhanced surveillance improves case ascertainment for better research and resource allocation.
Area of Science:
- Public Health
- Epidemiology
- Genetics
Background:
- Birth defects impact 1 in 33 infants in the US, contributing to infant mortality.
- Effective birth defect surveillance is vital for public health initiatives.
- The Massachusetts Birth Defects Monitoring Program (MBDMP) expanded data collection to include other pregnancy losses (OPLs) in 2011.
Purpose of the Study:
- To describe programmatic changes for incorporating OPLs into surveillance.
- To evaluate the impact of OPL inclusion on birth defect prevalence estimates.
Main Methods:
- Utilized population-based, statewide MBDMP data from 2012-2020.
- Assessed prevalence per 10,000 live births with and without OPLs.
- Analyzed data by time period, maternal age, and race/ethnicity.
Main Results:
- Including OPLs required statutory and regulatory amendments, new data sources, and enhanced data processing.
- Overall prevalence increased from 257.4 to 333.9 per 10,000 live births.
- Prevalence of neural tube defects and trisomies 13, 18, and 21 significantly increased after OPL inclusion.
Conclusions:
- Incorporating OPLs necessitated significant programmatic efforts but led to more complete birth defect ascertainment.
- Enhanced case ascertainment supports improved research, screening, and resource allocation for birth defects.
Background:
Birth defects affect 1 in 33 infants in the United States and are a leading cause of infant mortality. Birth defects surveillance is crucial for informing public health action. The Massachusetts Birth Defects Monitoring Program (MBDMP) began collecting other pregnancy losses (OPLs) in 2011, including miscarriages (<20 weeks gestation) or elective terminations (any gestational age), in addition to live births and stillbirths (≥20 weeks gestation). We describe programmatic changes for adding OPLs and their impact on prevalence estimates.
Methods:
Using population-based, statewide, data from the MBDMP (2012-2020), we assessed prevalence per 10,000 live births and 95% confidence intervals (CIs) with and without OPLs overall and for specific birth defects by time period, maternal age, and race/ethnicity.
Results:
Including OPLs required amending a state statute and promulgating regulations, new data sources, and additional data processing, cleaning, and verification. Overall prevalence with OPLs increased from 257.4 (95% CI: 253.5-261.4) to 333.9 (95% CI: 329.4-338.4) per 10,000; increases were observed in all time periods, age, and race/ethnicity groups. After including OPLs, the prevalence increased for neural tube defects [3.2 (2.7-3.6) to 8.3 (7.6-9.0)], and trisomies 13 [0.5 (0.3-0.7) to 4.1 (3.6-4.6)], 18 [1.5 (1.2-1.9) to 8.2 (7.5-8.9)], and 21 [12.3 (11.4-13.2) to 28.9 (27.6-30.2)]. Cardiovascular defects increased slightly, while prevalence of eye/ear, respiratory, and gastrointestinal defects remained similar.
Conclusions:
Adding OPLs required substantial programmatic efforts and resulted in more complete case ascertainment, particularly for certain birth defects. More complete case ascertainment will allow for improved research, screening, and resource allocation.
