Understanding long-term outcomes and care differences for children born with heart defects
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-11134076 · Data updated 2026-11-12
This project links surgical registry and Medicaid records to learn why children with congenital heart defects have different long-term health and care experiences.
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 | 2025 |
| Award (this year) | $2,015,832 |
| NIH project number | 2R01HL150044-06 |
| Project ID | NIH-11134076 on NIH RePORTER |
Who could benefit from this research
✓Could help
Children born with congenital heart defects who were covered by New York State Medicaid and whose surgical care is recorded in participating cardiac registries.
✕Less likely to help
Children who were not on Medicaid, who received care outside participating centers, or who lack registry or claims records are unlikely to be included or receive direct benefit.
What this research studies
The team combines pediatric cardiac surgery registry data with New York State Medicaid claims, death records, parent health claims, and neighborhood census measures to follow children over time. They track which surgeons and cardiologists patients saw, the care received after surgery, healthcare use, and survival. By comparing outcomes across income, neighborhood, and demographic groups, the work looks for system-level factors that drive disparities. The goal is to identify actionable changes in care delivery or policy to improve long-term health for kids with congenital heart disease.
Why it matters
Potential benefit: If successful, this work could point to specific healthcare and policy changes that reduce outcome gaps and improve survival and quality of life for children with congenital heart defects.
How similar studies have gone: Previous data-linkage efforts, including the team's prior work, have revealed disparities and suggested physician- and system-level contributors, so this approach has promising precedent.
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.