The goal of this research study is to transform outcomes for all people affected by single ventricle heart disease, particularly those with Fontan circulation. The Fontan Outcomes Network (FON) strives to advance our understanding of, and care for, single ventricle heart disease and address some of the major challenges. The ultimate goal is to dramatically improve physical health and functioning, neurodevelopment, and emotional health and resilience. To achieve that, we will collaborate between many care centers and with individuals with single ventricle heart disease and their families, to systematically collect information across the entire lifespan. FON includes a registry study, meaning information will be collected by your doctors and the researchers and entered and stored in a bank of information called a registry to be used for research as well as a learning network for quality improvement initiatives.
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