Surveillance of Congenital Heart Defects Among Children, Adolescents, and Adults - Project Abstract Summary Advances in treatment have improved survival for individuals with congenital heart defects (CHD), increasing prevalence. Despite this improved survival, there is limited data on age-specific mortality and long-term outcomes. Building on existing infrastructure from prior NOFOs DD1207, 1506, 1902A and B, by using multi-site encounter level data for people with CHD, we propose to, among people with CHD, (1) assess age-specific mortality, comorbidities, healthcare utilization and characteristics associated with long-term outcomes; (2) assess racial, ethnic and socioeconomic patterns in healthcare use and long-term outcomes and (3) improve understanding of health equity; (4) examine healthcare policies that impact people with CHD; (5) examine respiratory viruses and health care utilization during the pandemic; and (6) work with local/state partners to use site-specific CHD data to improve understanding of the impact of healthcare policy. Our source population is the state of Georgia. In 2021, the estimated population age 0-64 years was 9.1 million people, (33.1% Black, 10.5% Hispanic, 12.7% living in poverty, 13.6% uninsured). Collaborations include the Georgia Department of Public Health, statewide healthcare systems, and the Metropolitan Atlanta Congenital Defects Program. For Component B, we will build on machine learning (ML) models we developed in DD19-1902B using transfer learning to (1) develop/refine a machine learning algorithm for surveillance data collected and validated through Component A; and (2) apply this machine learning algorithm to data collected from sites to improve the accuracy of CHD surveillance data from DD24-0051A. We will post source code on GitHub and document end-to-end process. In 1902B, we demonstrated success in development of ML models to improve the accuracy of CHD surveillance data using multi-site data sets. The proposed project is integral to informing public health practice and health care policy to improve quality of life among individuals with CHD, while reducing the risk of mortality and preventable adverse health outcomes. Our team has the experience and expertise to successfully complete Components A and B, with the ability to start immediately. Regional and community partners enhance our surveillance system, increase awareness, and ensure data quality and consistency. Through our previous work, we have demonstrated success in conducting CHD surveillance in the proposed state, and have developed processes to assess data quality and performance measures applicable to the proposed project. We will disseminate findings from the project to stakeholders and the public through publications, presentations, community groups and communications.
