The National Institutes of Health has awarded the Icahn School of Medicine at Mount Sinai an $8.5 million renewal grant to continue groundbreaking work aimed at understanding and improving long-term outcomes for children with congenital heart disease-the most common type of birth defect in the United States.
The project, led by Brett Anderson, MD, MBA, MS, Director of the Center for Child Health Services Research in The Mindich Child Health and Development Institute at the Icahn School of Medicine, expands upon the earlier work of Dr. Anderson and her team, who created the first statewide data network to study long-term outcomes and health care use for children after congenital heart surgery. Known as the Congenital Heart Surgery Collaborative for Longitudinal Outcomes and Utilization of Resources (CHS-COLOUR), the network united data and surgical leaders from nearly all New York State congenital heart centers and the New York State Department of Health, linking clinical registry and insurance data and revealing how the staff and logistics of health care systems affect long-term outcomes.
The CHS-COLOUR found that children on Medicaid spent, on average, more than 90 days in hospitals and doctors' offices in the first five years after congenital heart surgery, with large variation across patient demographics-even among clinically similar groups. Further, the team found that differences among the providers who treated patients appeared to explain up to 20 percent of the observed differences in outcomes.
The renewed grant expands the collaborative, uniting clinical leadership and registry data from all 25 congenital heart surgical centers across four states (New York, Massachusetts, Colorado, and Texas) and 14 interdisciplinary co-investigators from across the country to create the most comprehensive national resource to date to study how differences in health care systems and structures can improve outcomes for kids after cardiac surgery.
"This grant truly represents teamwork at its best," said Dr. Anderson. "We've brought together congenital heart surgeons, fetal and pediatric cardiologists, pediatricians, public health experts, health economists, biostatisticians, and medical anthropologists to tackle these complex issues. From our earlier work, we know that children from different backgrounds often see different providers-even when they have similar insurance. Now we're asking how families connect with these providers and how the health care system can work more effectively to ensure better outcomes for all children." Dr. Anderson, a pediatric cardiologist, is also an Associate Professor of Pediatrics, and Population Health Science and Policy, at the Icahn School of Medicine.
"This renewal allows us to build something transformative," said Jane Newburger, MD, MPH, Commonwealth Professor of Pediatrics, Harvard Medical School; Associate Cardiologist-in-Chief for Academic Affairs, Boston Children's Hospital; and Co-Investigator on this grant. "Bringing together data, surgical and public health leaders, and innovative quantitative and qualitative expertise from across the country, we will be able to develop a deeper knowledge of how patients navigate insurance, prenatal care, and birth center selection; how they choose and access the pediatricians, cardiologists, and surgeons they see; and how these factors influence downstream care and outcomes across the life course."
Congenital heart defects are the most common and resource-intensive birth defects in the United States, affecting about one in every 100 live births or roughly 40,000 newborns each year. Treatment often requires open-heart surgery, sometimes multiple procedures. More than 10 percent of infants die from these surgeries, and those who survive often live with ongoing health problems. Research has shown that Hispanic and non-Hispanic Black children experience 15-20 percent higher mortality than non-Hispanic white children-even after adjusting for clinical risk factors, family income, neighborhood socioeconomics, and surgical center-but the reasons behind these variabilities remain poorly understood.
Dr. Anderson's work exemplifies Mount Sinai's commitment to driving improved health outcomes for all children through data-driven science. By linking robust clinical information with real-world health care data, this project has the power to change how we as providers and policymakers structure and deliver care for children with heart disease nationwide."
Bruce D. Gelb, MD, Dean for Child Health Research, Icahn School of Medicine at Mount Sinai
Dr. Gelb is also the Gogel Family Chair and Director of The Mindich Child Health and Development Institute and Professor of Pediatrics, and Genetics and Genomic Sciences, at the Icahn School of Medicine at Mount Sinai.
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