A Preparedness Model for Mother-Baby Linked Longitudinal Surveillance for Emerging Threats

Abstract

Introduction: Public health responses often lack the infrastructure to capture the impact of public health emergencies on pregnant women and infants, with limited mechanisms for linking pregnant women with their infants nationally to monitor long-term effects. In 2019, the Centers for Disease Control and Prevention (CDC), in close collaboration with state, local, and territorial health departments, began a 5-year initiative to establish population-based mother-baby linked longitudinal surveillance, the Surveillance for Emerging Threats to Mothers and Babies Network (SET-NET).

Objectives: The objective of this report is to describe an expanded surveillance approach that leverages and modernizes existing surveillance systems to address the impact of emerging health threats during pregnancy on pregnant women and their infants.

Methods: Mother-baby pairs are identified through prospective identification during pregnancy and/or identification of an infant with retrospective linking to maternal information. All data are obtained from existing data sources (e.g., electronic medical records, vital statistics, laboratory reports, and health department investigations and case reporting).

Results: Variables were selected for inclusion to address key surveillance questions proposed by CDC and health department subject matter experts. General variables include maternal demographics and health history, pregnancy and infant outcomes, maternal and infant laboratory results, and child health outcomes up to the second birthday. Exposure-specific modular variables are included for hepatitis C, syphilis, and Coronavirus Disease 2019 (COVID-19). The system is structured into four relational datasets (maternal, pregnancy outcomes and birth, infant/child follow-up, and laboratory testing).

Discussion: SET-NET provides a population-based mother-baby linked longitudinal surveillance approach and has already demonstrated rapid adaptation to COVID-19. This innovative approach leverages existing data sources and rapidly collects data and informs clinical guidance and practice. These data can help to reduce exposure risk and adverse outcomes among pregnant women and their infants, direct public health action, and strengthen public health systems.

Keywords: COVID-19; Congenital infection; Congenital syphilis; Perinatal hepatitis C; Pregnancy; SARS-CoV-2; Surveillance.

Fig. 1

Jurisdictions funded to participate in the Surveillance for Emerging Threats to Mothers and Babies Network (SET-NET) in year one

Fig. 2

General variables included in the Surveillance for Emerging Threats to Mothers and Babies Network (SET-NET)

Fig. 3

Modular data structure for Surveillance for Emerging Threats to Mothers and Babies Network (SET-NET), including general variables to be collected for all mother–baby pairs, and modular variables to be collected based on exposure of interest (e.g., general variables and variables included in the hepatitis C module are included for hepatitis C surveillance)