Pediatric Heart Network New York Consortium

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.