The American Heart Association and Additional Ventures have announced a combined $20 million commitment to address critical gaps in care for individuals with single ventricle heart disease, specifically those who have undergone the Fontan procedure. This collaborative effort aims to improve the ability to predict, prevent, and treat long-term health complications associated with Fontan circulation, a surgically created circulatory system for patients born with only one functional heart ventricle.
Single ventricle heart disease affects approximately 6 in 10,000 babies born in the United States each year. While the Fontan procedure is lifesaving, it places chronic strain on the body, leading to progressive damage across multiple organs, including the liver, kidneys, and lungs. Currently, clinicians lack reliable methods to monitor Fontan health, often resulting in patients appearing stable until they experience severe, sometimes fatal, complications.
The six-year, multi-phase program will bring together clinicians, researchers, and patients to generate scientific insights and develop clinical tools. The initiative leverages the American Heart Association's research infrastructure, guideline development, and registry science, combined with Additional Ventures' expertise in single ventricle disease strategy and network. The goal is to move from reactive care to proactive health monitoring, creating a foundation for future standards of care.
“People with Fontan circulation often develop complications with other organs in the body including the liver, kidneys and lungs,” said Mariell Jessup, M.D., FAHA, chief medical and science officer of the American Heart Association. “The coordination between our two organizations will generate data and insight that can help patients and clinicians better monitor their health and intervene earlier.”
Kirstie Keller, PhD, chief executive officer of Additional Ventures, emphasized the need for better understanding: “While lifesaving, Fontan circulation creates complex, lifelong health challenges for single ventricle heart disease patients that we still do not fully understand. Through this collaboration, we will work with researchers, clinicians and patients to generate the scientific insights and tools needed to predict, detect and manage complications earlier.”
The initial phase will evaluate current monitoring approaches, identify gaps in care and data, and engage stakeholders in program design. Ultimately, the initiative aims to establish a scientific foundation and clinical tools for proactive health monitoring. For more information about the American Heart Association, visit heart.org. To learn more about Additional Ventures, see their Impact Report.
