The American Heart Association and Additional Ventures have announced a combined $20 million commitment to address critical gaps in care for people living 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 health complications associated with Fontan circulation.
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 circulation, a surgically created pathway that reroutes blood through the body. While lifesaving, this circulation places long-term strain on multiple organs, including the liver, kidneys, and lungs, leading to progressive damage. Currently, clinicians lack reliable methods to monitor Fontan health, often resulting in patients appearing stable until severe, sometimes fatal, complications arise.
The program will bring together clinicians, researchers, and patients to generate scientific and clinical insights and develop tools to better guide care. 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 is structured as a six-year, multi-phase strategy. The first phase involves evaluating current monitoring approaches, identifying gaps in care, data, and infrastructure, and engaging stakeholders in program design. The ultimate goal is to establish the scientific foundation and clinical tools needed to transition from reactive care to proactive health monitoring for patients with Fontan circulation, creating the infrastructure for a future standard 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.”
“While lifesaving, Fontan circulation creates complex, lifelong health challenges for single ventricle heart disease patients that we still do not fully understand,” said Kirstie Keller, PhD, chief executive officer of Additional Ventures. “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. By building these resources, we hope to enable a more proactive, science-informed approach to lifelong care for Fontan patients.”
The American Heart Association, a leading source of health information for over a century, is dedicated to ensuring equitable health in all communities. Additional Ventures, founded in 2020, has committed more than $110 million to single ventricle heart disease research. This $20 million commitment represents a significant step toward transforming care for this patient population.
