The American Heart Association and Additional Ventures have announced a combined $20 million initiative to address critical gaps in care for people living with single ventricle heart disease, specifically those who have undergone the Fontan procedure. The program seeks to improve the ability to predict, prevent, and treat health complications associated with Fontan circulation, which can lead to progressive damage across multiple organs over time.
Single ventricle heart disease affects approximately 6 in 10,000 babies born in the U.S. each year, according to a study published in ScienceDirect. These children are born with only one working heart pump and require a surgically created circulation, known as Fontan circulation, to reroute blood through the body. While this surgery is lifesaving, it places long-term strain on the body, leading to complications in organs such as the liver, kidneys, and lungs. Clinicians currently lack reliable ways to monitor Fontan health, often missing early signs of decline until severe complications occur.
"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."
The six-year, multi-phase strategy will begin by 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. The ultimate goal is to establish the scientific foundation and clinical tools needed to move from reactive care to proactive health monitoring, creating the infrastructure for a future standard of care.
"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 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 deep scientific expertise. Additional Ventures, founded in 2020, has committed more than $110 million to single ventricle heart disease research, as detailed in their Impact Report.
This collaboration represents a significant step toward improving outcomes for a vulnerable patient population that has long faced uncertainty and limited monitoring options. By generating data and developing tools, the initiative aims to enable earlier intervention and better long-term management of Fontan-related complications.
