@article{91439cd4070f40719297022c0e134d6e,
title = "The Fontan outcomes network: First steps towards building a lifespan registry for individuals with Fontan circulation in the United States",
abstract = "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.",
keywords = "Fontan, improving outcomes, registry, single ventricle",
author = "Tarek Alsaied and Allen, {Kiona Y.} and Anderson, {Jeffrey B.} and Anixt, {Julia S.} and Brown, {David W.} and Frank Cetta and Rachael Cordina and Yves D'Udekem and Meghan Didier and Salil Ginde and {Di Maria}, {Michael V.} and Michelle Eversole and David Goldberg and Goldstein, {Bryan H.} and Erin Hoffmann and Kovacs, {Adrienne H.} and Carole Lannon and Stacey Lihn and Lubert, {Adam M.} and Marino, {Bradley S.} and Emily Mullen and Diane Pickles and Rathod, {Rahul H.} and Jack Rychik and Tweddell, {James S.} and Sharyl Wooton and Gail Wright and Adel Younoszai and Tom Glenn and Alicia Wilmoth and Kurt Schumacher",
note = "Funding Information: We would like to acknowledge Nadine Kasparian, Mike Bingler, Jennie Briend, Bridget Buts, Christina Ewers, Richard James, Anitha John, Travis Lewis, Debbie Menet Landi, Megan Rose, Nichole Sage, Michelle Steltzer, Emily Johnson, and Sarah McGovern for their input and participation in the Fontan Outcomes Network. Children{\textquoteright}s Heart Association of Cincinnati for their financial support of the design of the Fontan Outcome Network. Publisher Copyright: {\textcopyright} 2020 Cambridge University Press. All rights reserved.",
year = "2020",
doi = "10.1017/S1047951120001869",
language = "English (US)",
volume = "30",
pages = "1070--1075",
journal = "Cardiology in the Young",
issn = "1047-9511",
publisher = "Cambridge University Press",
number = "8",
}