The American Heart Association and Additional Ventures have announced a combined $20 million commitment to advance research and clinical tools for people living with single ventricle heart disease, a condition affecting about 6 in 10,000 babies born in the U.S. each year. The initiative focuses on improving the ability to predict, prevent, and treat health complications in patients who have undergone the Fontan procedure, a lifesaving surgery that creates a unique circulation pattern but often leads to long-term health issues.
Single ventricle heart disease occurs when a child is born with only one functioning heart pump, requiring a surgically created circulation known as Fontan circulation to reroute blood through the body. While this surgery is lifesaving, it places chronic strain on multiple organs, including 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 suddenly experience severe complications that can be fatal or significantly impair quality of life.
According to the American Heart Association, the program will bring together clinicians, researchers, and patients to generate scientific insights and develop tools to better guide care for those with Fontan circulation. The collaboration combines the Association's research infrastructure, guideline development, and registry science with Additional Ventures' deep scientific expertise and network in the single ventricle heart disease ecosystem.
“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 six-year, multi-phase strategy begins with evaluating current approaches to monitoring Fontan circulation patients, identifying gaps in care, data, and infrastructure, and engaging patients, clinicians, and scientists in program design. Ultimately, the goal is to establish the scientific foundation and clinical tools needed to move the field from reactive care to proactive health monitoring, creating infrastructure for a future standard of care.
