# Pediatric Heart Network New York Consortium

> **NIH NIH UM1** · COLUMBIA UNIVERSITY HEALTH SCIENCES · 2024 · $482,068

## Abstract

PROJECT SUMMARY / ABSTRACT
Congenital heart defects are the most common and resource intensive birth defects managed in the United
States and have high morbidity and mortality. Further, significant disparities are known to exist in both
outcomes and resource requirements. Neighborhood economics, education, environment, and interpersonal
bias are thought to contribute to these inequities, yet mechanisms—and optimal targets for intervention—are
unknown. Marked heterogeneity in disease subtypes among congenital heart patients limits the power of
single-center studies and complicates conduct and interpretation of clinical research. Multicenter data are often
siloed in diagnostic or procedural registries, in in-patient databases, or are the product of individual trials and
investigations. Consequently, research conducted to improve outcomes in the CHD population is often
insufficiently powered or lacks the degree of phenotypic and socioeconomic detail necessary to allow for
clinical progress for all patients. Enhanced registry-based clinical trials that expand the “data lake” by marrying
a variety of “big data” sources—clinical registry, administrative, individual and neighborhood level social
determinants, and National Death Index (NDI) data—with prospectively collected patient-reported and clinical
outcome measures and deep genomic and proteomic phenotyping can increase effectiveness and efficiency of
clinical research. Such collaborative efforts can help us understand mechanisms underlying health inequities
such that we can develop interventions to improve care for all CHD patients. We propose bringing together
two integrated, pediatric and adult congenital heart centers in northern Manhattan with complementary, data
and clinical research expertise, to form the Pediatric Heart Network New York Consortium (PHN-NYC).
Together, these centers serve a large and diverse patient population that represents ~60% of patients
undergoing congenital heart surgery across all of New York State, is 47% low income and 36% NH-Black or
Hispanic. This consortium would leverage its interdisciplinary strengths to accomplish the following aims: 1)
Create a novel infrastructure, linking existing locally held clinical registry, administrative, social determinants of
health, and NDI data with prospectively collected genomic, proteomic, and clinical trial data to support
enhanced registry-based investigations, capable of identifying modifiable mediators of health inequities; 2)
expand engagement of families affected by congenital heart disease traditionally underrepresented in clinical
research; and 3) leverage existing NIH-funded investigator training initiatives to expand and support a next
generation of diverse congenital heart clinical researchers.

## Key facts

- **NIH application ID:** 10841299
- **Project number:** 1UM1HL172720-01
- **Recipient organization:** COLUMBIA UNIVERSITY HEALTH SCIENCES
- **Principal Investigator:** Brett Romeo Anderson
- **Activity code:** UM1 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $482,068
- **Award type:** 1
- **Project period:** 2024-01-01 → 2030-12-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10841299

## Citation

> US National Institutes of Health, RePORTER application 10841299, Pediatric Heart Network New York Consortium (1UM1HL172720-01). Retrieved via AI Analytics 2026-07-19 from https://api.ai-analytics.org/grant/nih/10841299. Licensed CC0.

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