Congenital heart defects (CHDs), which are present in about 1% of all births, are an important cause of morbidity and mortality. Surveillance programs for CHDs play a critical role by allowing public health
agencies to target gaps in case ascertainment and the timely delivery of high quality care. Although dramatic improvements have occurred, there are significant disparities by race/ethnicity and socioeconomic status related to CHD identification, receipt of health care services, and CHD-related health outcomes. This application for a Category A collaborative project will expand an existing population-based surveillance system of CHDs in North Carolina (NC) to provide a comprehensive database of individuals in NC between the ages of 1 and 45 years from 2008-2017. We will expand our existing database with additional data from individuals identified from 2014-2017 and will provide updated outcomes for the over 12,600 individuals with CHD between ages 1-45 years already in our database from 2008-2013. The NC CHD surveillance system links data sources including the NC Defects Monitoring Program, the Society of Thoracic Surgeons Congenital Heart Surgery database (STS-CHSD), medical records from each of the NC sites that provides care for individuals with CHDs, vital records, educational outcomes, and geographic information system (GIS) data. Our expanded surveillance system will continue to engage partners and stakeholders in evaluating care delivery. The overarching goals are: (1) to develop a high-quality surveillance system to monitor health services utilization outcomes for individuals with CHDs; (2) to disseminate knowledge that will improve health care delivery of CHD, including decreasing racial and ethnic disparities, and (3) to partner with the CDC and similar funded projects in other states to enhance the quality and utility of CHD surveillance systems across the nation. The surveillance network will submit de-identified data to the CDC, which will then be used to describe CHD epidemiology, health services utilization, and health outcomes nationally. Within the state, the surveillance network will be used to target specific services to the need of the population
and will focus on evaluating for health care disparities. The surveillance data can be linked to other existing geographic information systems to describe small area variations in differences in case ascertainment, health services utilization, health outcomes, and educational outcome by location within the state, availability of local clinical services, and neighborhood level factors (e.g., transportation systems, schools, population-level income, race/ethnicity distribution).