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 six-year initiative addresses the serious long-term health challenges faced by individuals with single ventricle heart disease, a condition affecting approximately 6 in 10,000 babies born in the United States annually.
Children with single ventricle heart disease are born with only one functioning heart pump and must rely on the surgically created Fontan circulation to reroute blood through their bodies. While lifesaving, this circulation places long-term strain on multiple organ systems, often leading to progressive damage. Currently, clinicians lack reliable methods to monitor Fontan health, making early detection of decline nearly impossible. Consequently, many patients appear stable until experiencing sudden, severe complications that can be fatal or significantly impact quality of life.
"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 program will combine 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. More information about the American Heart Association's broader mission can be found at https://heart.org.
Kirstie Keller, PhD, chief executive officer of Additional Ventures, emphasized the complexity of lifelong health challenges created by Fontan circulation. "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," Keller stated. Additional Ventures has committed more than $110 million to single ventricle heart disease research since its founding, with details available in their https://additionalventures.org Impact Report.
The multi-phase strategy begins with evaluating current monitoring approaches, identifying gaps in care and data infrastructure, and engaging patients, clinicians, and scientists in program design. The ultimate goal is to establish the scientific foundation and clinical tools necessary to transition from reactive care to proactive health monitoring for Fontan patients. This initiative represents a significant step toward creating infrastructure for a future standard of care that could transform outcomes for this vulnerable patient population.
The collaboration's focus on generating scientific and clinical insights through coordinated data collection and analysis could lead to earlier intervention protocols and improved quality of life for Fontan patients worldwide. By addressing the critical gap in monitoring capabilities, this $20 million effort has the potential to shift the treatment paradigm from crisis management to preventive care, ultimately reducing sudden complications and mortality rates associated with single ventricle heart disease.
