The American Heart Association and Additional Ventures have announced a combined $20 million commitment to address critical gaps in care for individuals living with single ventricle heart disease, specifically those who have undergone the Fontan procedure. This collaborative effort seeks to develop tools and insights to better predict, prevent, and treat health complications associated with Fontan circulation, which can lead to progressive damage across multiple organs over time.
Single ventricle heart disease affects approximately 6 in 10,000 babies born in the United States each year, according to a study published in ScienceDirect. Children born with this condition have only one functional heart pump and rely on the Fontan procedure to reroute blood flow. While this surgery is lifesaving, the resulting circulation places long-term strain on the body, often leading to complications in the liver, kidneys, and lungs. Currently, clinicians lack reliable methods to monitor Fontan health, making it difficult to detect early signs of decline. As a result, many patients appear stable until they experience severe, sometimes fatal, complications.
The six-year, multi-phase program will bring together clinicians, researchers, and patients to generate scientific and clinical insights. It combines the American Heart Association's research infrastructure, guideline development, and registry science with Additional Ventures' expertise in single ventricle strategy and its network across the single ventricle heart disease ecosystem. The initiative begins by evaluating current monitoring approaches, identifying gaps in care and data, and engaging stakeholders in program design. The ultimate goal is to establish the scientific foundation and clinical tools needed to move from reactive care to proactive health monitoring, creating a future standard of care for Fontan patients.
“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, added, “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.”
Additional Ventures, a research foundation founded in 2020, has committed more than $110 million to single ventricle heart disease research to date. The American Heart Association, supported by more than 35 million volunteers globally, funds groundbreaking research and advocates for public health. More information about the organizations can be found at heart.org and additionalventures.org.
