Surveillance of Congenital Heart Defects Among Children, Adolescents, and Adults

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The purpose of this program is to support the development of population-based surveillance systems and data linkages for persons with congenital heart defects (CHDs) using non-research CDC cooperative agreements. An estimated 2 million persons in the United States are living with a CHD, yet little is known about their long-term outcomes. High-quality data will improve the public's understanding of the epidemiology and public health significance of CHDs. Surveillance data will allow monitoring of special sub-populations with CHDs and potentially identify risk factors and prognostic factors for identifying opportunities and developing effective secondary prevention strategies directed at reducing the personal and public health impact of CHDs and improving the lives of individuals with a CHD. The planned objectives of this NOFO are: COMPONENT A: Surveillance of CHDs among individuals aged 1-45 years through linkage of existing data sources 1) Develop and implement innovative approaches for conducting surveillance of CHDs among individuals aged 1-45 years; 2) Assess age-specific mortality, healthcare utilization, comorbidities, and other outcomes over time among these individuals. COMPONENT B: Validate codes and develop processes for identifying individuals of all ages with CHDs using healthcare claims data 1) Determine sensitivity and positive predictive value of healthcare claims data for identifying individuals of all ages with CHDs; 2) Determine how validity of healthcare claims data differs by age, CHD severity, CHD type, and other individual or healthcare characteristics; 3) Using healthcare claims data, develop and test different processes to estimate prevalence and examine comorbidities and other outcomes among individuals with CHDs; 4) Inform activities on surveillance of CHDs across the lifespan that rely on understanding the validity of administrative data sources.

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