The Fontan outcomes network: first steps towards building a lifespan registry for individuals with Fontan circulation in the United States.
Tarek AlsaiedKiona Y AllenJeffrey B AndersonJulia S AnixtDavid W BrownFrank CettaRachael CordinaYves D'udekemMeghan DidierSalil GindeMichael V Di MariaMichelle EversoleDavid GoldbergBryan H GoldsteinErin HoffmannAdrienne H KovacsCarole LannonStacey LihnAdam M LubertBradley S MarinoEmily MullenDiane PicklesRahul H RathodJack RychikJames S TweddellSharyl WootonGail WrightAdel YounoszaiTom GlennAlicia WilmothKurt SchumacherPublished in: Cardiology in the young (2020)
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.
Keyphrases
- healthcare
- public health
- mental health
- type diabetes
- health information
- young adults
- randomized controlled trial
- climate change
- depressive symptoms
- insulin resistance
- clinical trial
- quality improvement
- coronary artery
- mitral valve
- deep learning
- electronic health record
- left ventricular
- skeletal muscle
- glycemic control
- artificial intelligence
- pulmonary arterial hypertension