The American Heart Association and Additional Ventures have committed a combined $20 million to advance a coordinated approach to improving the ability to predict, prevent, and treat health complications in people living with Fontan circulation. This initiative addresses a critical gap in care for individuals with single ventricle heart disease, a condition affecting approximately 6 in 10,000 babies born in the U.S. each year. These children are born with only one working heart pump and must rely on the surgically created Fontan circulation to reroute blood through the body.
While lifesaving, the Fontan procedure places long-term strain on the body and can lead to progressive damage across multiple organs. Currently, clinicians lack reliable ways to monitor Fontan health, making them unable to detect early signs of decline. Consequently, many patients appear stable until they suddenly experience severe complications that can be fatal or severely impact quality of life. People with Fontan circulation often develop complications with other organs including the liver, kidneys, and lungs, according to Mariell Jessup, M.D., FAHA, chief medical and science officer of the American Heart Association.
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. The program combines the American Heart Association's research infrastructure, guideline development, data coordination, and registry science with Additional Ventures' leadership in single ventricle strategy and scientific expertise. Additional Ventures has committed more than $110 million to single ventricle heart disease research since its founding in 2020, as detailed in their Impact Report available at https://additionalventures.org.
Kirstie Keller, PhD, chief executive officer of Additional Ventures, noted that Fontan circulation creates complex, lifelong health challenges that are not fully understood. The collaboration aims to work with researchers, clinicians, and patients to generate scientific insights and tools needed to predict, detect, and manage complications earlier. Ultimately, the goal is to establish the scientific foundation and clinical tools needed to move from reactive care to proactive health monitoring, creating infrastructure for a future standard of care.
This initiative represents a significant step toward addressing the long-term health consequences faced by Fontan patients. By developing better monitoring tools and predictive capabilities, the program could potentially reduce sudden severe complications and improve quality of life for thousands of individuals living with this condition. The American Heart Association provides cardiovascular health information at https://heart.org, while Additional Ventures shares research progress at https://additionalventures.org.
