Details

Autor(en) / Beteiligte

• Alsaied, Tarek
• Allen, Kiona Y.
• Anderson, Jeffrey B.
• Anixt, Julia S.
• Brown, David W.
• Cetta, Frank
• Cordina, Rachael
• D’udekem, Yves
• Didier, Meghan
• Ginde, Salil
• Di Maria, Michael V.
• Eversole, Michelle
• Goldberg, David
• Goldstein, Bryan H.
• Hoffmann, Erin
• Kovacs, Adrienne H.
• Lannon, Carole
• Lihn, Stacey
• Lubert, Adam M.
• Marino, Bradley S.
• Mullen, Emily
• Pickles, Diane
• Rathod, Rahul H.
• Rychik, Jack
• Tweddell, James S.
• Wooton, Sharyl
• Wright, Gail
• Younoszai, Adel
• Glenn, Tom
• Wilmoth, Alicia
• Schumacher, Kurt

Titel

The Fontan outcomes network: first steps towards building a lifespan registry for individuals with Fontan circulation in the United States

Ist Teil von

• Cardiology in the young, 2020-08, Vol.30 (8), p.1070-1075

Ort / Verlag

Cambridge: Cambridge University Press

Erscheinungsjahr

2020

Link zum Volltext

Quelle

Alma/SFX Local Collection

Beschreibungen/Notizen

• 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.