Friday, May 9, 2025
5/9/2025
Surveillance of Congenital Heart Defects Among Children, Adolescents, and Adults - The University of Arizona Programs in Surveillance (APS) is uniquely poised to provide population-based data on a variety of geographically, culturally, and socioeconomically challenged subpopulations of children, adolescents, and adults with CHD. This proposal will address the public health problem described in the background section of the notice of funding opportunity by providing the data needed to: 1) develop accurate and complete population- based surveillance of congenital heart defects among children, adolescents and adults; and 2) examine descriptive epidemiology, survival, healthcare utilization, comorbidities and other long-term outcomes. APS has long-established data sharing agreements with numerous health care and administrative organizations and is currently positioned to conduct active case-finding and data collection for CHDs in individuals 1 – 45 years of age. Our existing surveillance system has maintained CHD as a surveillance population since 2002. We propose to capitalize on numerous existing relationships and develop new collaborations that include general and specialty healthcare sources as well as access to non-healthcare data sources. We describe the approaches that will be utilized to create: (OC1) Diverse partnership collaborations are established which will result in comprehensive identification of cases and healthcare encounters to fulfill program goals (OC2) Improved knowledge on the characteristics of individuals identified from multiple high- quality data sources (OC3) Improved understanding/ability to calculate age-specific mortality in persons with CHDs (OC4) Improved understanding of healthcare utilization, comorbidities and other outcomes (OC5) Improved understanding of racial/ethnic or socioeconomic patterns in healthcare use or long-term outcomes in study population (OC6) Improved understanding of strengths & limitations of integrated surveillance for CHDs among public health practitioners through establishing diverse partnership collaborations (OC7) Increased awareness among health service providers, patients, parents and public of nationwide CHD issues and improved information available (OC8) Improved information to the public, patients, families, and policy makers on healthcare utilization, comorbidities and outcomes of individuals We will achieve these outcomes with the following goals: Goal 1: Generate a population-based surveillance cohort of at least 2000 individuals aged 1y – 45y with an eligible CHD of which at least 300 are aged 18y or younger and 300 are aged 35y-45y that includes health and nonhealth information from 2008 - 2017. Goal 2: In collaboration with the members of the surveillance network, outline, draft and disseminate a report on descriptive epidemiology of individuals aged 1-45 years with CHDs Goal 3: In collaboration with the members of the surveillance network, outline, draft and disseminate a report on health and nonhealth outcomes of individuals aged 1-45 years with CHDs
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