Why the study?
The Fontan Outcomes Network was created to improve outcomes, longevity, and quality of life for children and adults with single ventricle CHD living with Fontan circulation.
The Fontan Outcomes Network is being developed as a national lifespan registry in the US to improve outcomes for individuals with single ventricle CHD and Fontan circulation.
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Provides infrastructure for national Fontan lifespan data; leaves open whether this network improves outcomes.
The Fontan Outcomes Network was created to improve outcomes for children and adults with single ventricle CHD living with Fontan circulation. The network mission is to optimise longevity and quality of life by improving physical health, neurodevelopmental outcomes, resilience, and emotional health for these individuals and their families. This manuscript describes the systematic design of this new learning health network, including the initial steps in development of a national, lifespan registry, and pilot testing of data collection forms at 10 congenital heart centres.
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Alsaied et al. (2020) studied this question.
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