The North Carolina Congenital Heart Disease Surveillance Network - Congenital heart defects (CHDs) are associated with high morbidity and are the most common birth defect-related cause of death affecting nearly 1% of all live births per year in the United States. CHD survivors require specialized health care services and are at increased risk for poor neurodevelopmental outcomes and comorbidities. Another concern for individuals with CHDs is the high prevalence of health disparities. Together, these findings highlight the need to identify the social determinants of health (laid bare by the COVID-19 pandemic) and their impact on outcomes for US policy development, educational efforts, and service planning. We will address these concerns through expansion of the North Carolina (NC) CHD Surveillance Network which covers a population of ~10.8 million people and represents a diverse population in race/ethnicity (22.2% Black, 10.5% Hispanic) and socioeconomic status (12.2% live below the federal poverty line). NC-CHD was developed at Duke Clinical Research Institute (DCRI) by linking multiple clinical and related datasets including the NC Birth Defects Monitoring Program (NC-BDMP), the Society of Thoracic Surgeons Congenital Heart Surgery Database (STS-CHSD), electronic medical record data from all five NC sites providing comprehensive CHD care, vital statistics, NC Medicaid, and education data from NC public schools while incorporating geographic information system mapping. As a participating site in previous CHD surveillance efforts, we have established robust methodology for our linkage and data management systems. Herein, we propose to expand our network to capture data for an estimated 30,000 individuals (ages 0-64 years) with CHDs in NC from 2021-2023. Our overarching goals are: (1) to develop a high-quality surveillance system to monitor health services utilization and outcomes for individuals with CHDs; (2) to disseminate knowledge improving health care delivery of CHD and decreasing racial and ethnic dis-parities; and (3) to partner with the CDC and other sites to enhance the quality of CHD surveillance. We will make relevant findings available to the public to advance healthcare for individuals with CHDs.
