Linking Medicaid and Heart Registry Data to understand disparities in outcomes for children with congenital heart disease
Official title: 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
Funded at Icahn School of Medicine at Mount Sinai · NIH-11417907 · Data updated 2026-11-12
A patient-facing summary: researchers are linking Medicaid data with heart surgery registries to understand why outcomes differ for children with congenital heart disease and how the healthcare system may influence those differences.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Icahn School of Medicine at Mount Sinai NIH-funded |
| Lab location | 1 site (New York, United States) |
| Project start | January 5, 2020 |
| Project end | June 30, 2030 |
| Funding year | 2026 |
| Award (this year) | $1,595,828 |
| NIH project number | 5R01HL150044-07 |
| Project ID | NIH-11417907 on NIH RePORTER |
Who could benefit from this research
✓Could help
Children and young adults with congenital heart defects who are on Medicaid or related health coverage and receive cardiac surgical care.
✕Less likely to help
Patients not linked to Medicaid or without congenital heart disease may not directly benefit from this specific data linkage effort.
What this research studies
This project connects state Medicaid data with hospital heart surgery records to track long-term outcomes for children with congenital heart disease. It uses population-based data to examine how demographics, neighborhood factors, and health care utilization relate to survival and quality of life. The goal is to identify actionable targets in the system that could reduce disparities and improve care for all affected children and their families. The work builds on an established data collaboration that already linked records to mortality and claims, expanding to include more families and regional factors.
Why it matters
Potential benefit: If successful, the project could reveal system-level factors that drive disparities and inform policies to improve long-term outcomes for children with congenital heart disease.
How similar studies have gone: Previous work showed that linking registries with claims data can uncover disparities and influence care, but deeper regional and socio-economic factors require further study.
Where this research is happening
-
Icahn School of Medicine at Mount Sinai
New York, United States Active
Researchers
- Principal investigator: Anderson, Brett Romeo — Icahn School of Medicine at Mount Sinai
- Study coordinator: Anderson, Brett Romeo
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About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page.