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Linking State Medicaid and Congenital Heart Surgical Registry Data: Building Capacity to Assess Disparities in Longitudinal Outcomes and Value for Children with Congenital Heart Disease

US National Heart Lung and Blood Institute grant open #nih-2R01HL150044-06

Summary

Congenital heart defects are the most common birth defects managed in the United States, affecting 1% of live births. Survivors often describe significant, chronic disease. Yet, limited longitudinal data exist. Further, income and other demographics are associated with ~20% variation in mortality, even after controlling for clinical risk and center . Yet mechanisms remain unknown. Understanding how the healthcare system contributes to differences in outcomes across populations can reveal actionable targets. In our parent R01, we created the first, population-based, congenital heart data collab

Linking State Medicaid and Congenital Hear…
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