| Literature DB >> 32635947 |
Tarek Alsaied1, Kiona Y Allen2,3, Jeffrey B Anderson1, Julia S Anixt4,5, David W Brown6,7, Frank Cetta8, Rachael Cordina9, Yves D'udekem10, Meghan Didier11,12, Salil Ginde13, Michael V Di Maria14, Michelle Eversole15, David Goldberg16, Bryan H Goldstein17, Erin Hoffmann18, Adrienne H Kovacs19, Carole Lannon15,20, Stacey Lihn11,12, Adam M Lubert1, Bradley S Marino2,3, Emily Mullen15,20,21, Diane Pickles22, Rahul H Rathod6,7, Jack Rychik16, James S Tweddell1,23, Sharyl Wooton15,20, Gail Wright24, Adel Younoszai14, Tom Glenn25, Alicia Wilmoth1, Kurt Schumacher26.
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.Entities:
Keywords: Fontan; improving outcomes; registry; single ventricle
Mesh：
Year: 2020 PMID： 32635947 DOI： 10.1017/S1047951120001869
Source DB: PubMed Journal: Cardiol Young ISSN： 1047-9511 Impact factor: 1.093