New $20 Million Initiative Targets Critical Care Gaps for Single Ventricle Heart Disease Patients

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. Single ventricle heart disease affects about 6 in 10,000 babies born in the United States each year according to data from ScienceDirect. These children are born with only one working heart pump and must rely on a surgically created circulation to reroute blood through the body.

While lifesaving, this circulation places long-term strain on the body and can lead to progressive damage across multiple organs. Today, clinicians lack reliable ways to monitor Fontan health, making them unable to detect early signs of decline. As a result, many patients appear stable until they suddenly experience severe complications that can be fatal or severely impact quality of life. The program will bring together clinicians, researchers, and patients to generate scientific and clinical insights and develop tools to better guide care for people living with Fontan circulation.

The program combines the strength of the American Heart Association's research infrastructure, guideline development, data coordination, and registry science with Additional Ventures' leadership in single ventricle strategy, deep scientific expertise, and unparalleled network across 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, according to 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 and implementation. Ultimately, the goal is to establish the scientific foundation and clinical tools needed to move the field from reactive care to proactive health monitoring of patients with Fontan circulation, creating the infrastructure for a future standard of care. This initiative represents a significant step toward addressing the critical gaps in long-term management for this vulnerable patient population.