Surveillance of Congenital Heart Defects Among Children, Adolescents, and Adults: Component A (UTHealth) - This proposal outlines a comprehensive approach to establish multi-dimensional, population-based surveillance for congenital heart defects (CHD) via a collaboration between the UTHealth Houston School of Public Health (UTHealth SPH), Baylor College of Medicine (BCM), the Texas All Payors Claims Database (TX-APCD) and the Texas Birth Defects Registry (TBDR) at the Texas Department of State Health Services (DSHS). Through strategic partnerships and meticulous data management, our aim is to enhance knowledge about CHD characteristics, healthcare utilization, and health equity among affected individuals. Leveraging existing data sources and employing rigorous analysis techniques, our initiative seeks to address key outcomes including age-specific mortality, healthcare disparities, impact of respiratory viruses, and implications of healthcare policies. We will we achieve this by creating the population-based Texas HEart Malformation surveillancE System (THEMES) database, integrating data from one of the largest state birth defects registries linked to data from vital records, national death index records, and medical claims records from the statewide Texas All Payor Claims Database (inclusive of medical, pharmacy, and dental claims, as well as eligibility and provider files, collected from private and public payors). The Texas Birth Defects Registry is one of the world's largest and most diverse population-based active birth defects surveillance systems, and it represents nearly 100% of infants with CHDs born in Texas to women residing in Texas, whereas the APCD represents nearly 100% of medical claims regulated by the state Medicaid and private insurance. These data sources will provide a comprehensive view of CHD prevalence, healthcare utilization patterns, and outcomes in a state that accounts for approximately 10% of the total U.S. population. Our initiative is particularly significant in a state characterized by its diverse population, with approximately 39.3% Hispanic and 11.8% non-Hispanic Black individuals. By emphasizing the diversity of our population, we aim to ensure that our surveillance efforts capture the full spectrum of CHD experiences and disparities within our communities. By disseminating findings and engaging stakeholders, we will help facilitate systemic improvements in CHD management and care delivery. Thus, our proposed initiative aims to demonstrate the effectiveness of comprehensive surveillance systems for CHDs (age 0-64) in Texas. Specifically, our project will achieve the following aims: 1. Generate the population-based Texas HEart Malformation surveillancE System (THEMES) database. 2. Describe characteristics, utilization, and outcomes among individuals with CHDs in Texas: (a) Improvement in understanding the characteristics of individuals with CHDs through analysis of multiple high-quality data sources. (b) Enhanced understanding of age-specific mortality rates among individuals with CHDs. (c) Detailed examination of healthcare utilization, comorbidities, and other outcomes associated with CHDs. (d) Investigation of racial/ethnic and socioeconomic patterns in healthcare use and long-term outcomes. (e) Investigating the Impact of Respiratory Viruses, Including COVID-19, on CHD Outcomes. (f) Evaluation of the strengths and limitations of data sources for providing information about individuals with CHDs. 3. Submit individual-level data to CDC and increase stakeholder awareness.
