Birth defects are a significant public health concern in the United States. According to a 2013 Centers for Disease Control (CDC) study, birth defects affect 3% of all live births and are the cause of 20% of infant deaths. Birth defect–associated hospitalizations are disproportionately costly, accounting for 3% of all hospitalizations and 5.2% of total hospital costs. The estimated annual cost of birth defect–associated hospitalizations in the United States in 2013 was $22.9 billion. The impact was highest for hospitalizations related to congenital heart defects, at a cost of more than $6 billion.
Every year in New Jersey, about 3,000 children, or 3% of all live births, are born with one or more birth defects. According to NJ State Health Assessment Data (NJ SHAD), birth defects were the second leading cause of infant death in New Jersey in 2015, causing 41 fetal deaths and 87 infant deaths. Moreover, birth defects comprise a significant but unknown portion of elective pregnancy terminations.
The New Jersey Birth Defects Registry (BDR) is a population-based confidential registry that is enabled through legislation NJSA 26:8-40.2. The law requires the reporting of all children diagnosed with birth defects and severe hyperbilirubineia through five years of age (older children may be reported up to age 22 years). The BDR receives about 5,000 reports per year of children with one or more birth defects. New Jersey laws also require reporting children who fail a newborn pulse oximetry test (CCHD screen) and children diagnosed with an Autism Spectrum Disorder (ASD). All children reported to the BDR are referred to family-centered, county-based case management services that assist families in finding services and resources.
In this grant cycle, the New Jersey Department of Health proposes to increase birth defect surveillance capacity, by implementing strategies to improve the efficiency and effectiveness of surveillance methodology, improving readiness to exchange data with EHRs, and ascertaining all pregnancy outcomes (live births, stillbirths, and pregnancy terminations). In addition, the BDR will improve birth defects surveillance data quality by enhancing its surveillance tool, the Birth Defects and Autism Reporting System (BDARS). The BDR will enhance birth defects epidemiology by incorporating data on fetal deaths into the BDARS and linking surveillance data and death records to enable assessment of mortality and survival. Staff will utilize insights from surveillance data to identify at-risk populations, and drive policies and programs that prevent or reduce the risk of birth defects, eliminate disparities in services, and improve outcomes.
Lastly, the New Jersey Department of Health proposes to utilize its Critical Congenital Heart Defects (CCHD) surveillance capacity to collect data on CCHD screening and detection, including results of pulse-oximetry screening, and provide the data on a yearly basis to the CDC.