Foundational resources are required to ask and answer the most pressing questions in single ventricle science and care. We believe in the power of open-access data and the free sharing of information to bring the scientific and medical community together to advance progress.
We lead and support efforts to build critically important datasets and develop integrated, comprehensive, and open-access foundational resources available to the entire single ventricle research enterprise.
ADVANCED CARDIAC THERAPIES IMPROVING OUTCOMES NETWORK (ACTION)
ACTION is a collaborative learning network of more than 50 cardiac care centers across the globe working together to improve care and outcomes for congenital heart disease patients who are in heart failure, many of whom have single ventricle defects. We are funding initiatives to improve the timely referral of patients to transplant centers, stabilize the medical conditions of the listed patients, and improve donor/recipient transplant matching.
FONTAN OUTCOMES REGISTRY USING CMR EXAMINATIONS (FORCE)
FORCE is a newly-launched and rapidly-growing network of cardiac centers sharing retrospective imaging and clinical data in order to predict outcomes for single ventricle patients. FORCE will develop machine-learning algorithms to guide customized decision-making about when and how to introduce medical interventions. We are providing start-up funding for this innovative registry.
FONTAN OUTCOMES NETWORK
The Fontan Outcomes Network is a soon-to-be-launched longitudinal, lifespan registry and collaborative learning network focused on improving the longevity and quality of life for single ventricle patients. The Network’s goal is to optimize patient physical health and functioning, neurodevelopmental outcomes, and mental health and resilience. We are providing funding to build and launch the registry and the learning network with twelve pilot cardiac care centers.
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