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

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

doi:10.1017/S1047951120001869

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

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

Department of Medicine

Research output: Contribution to journal › Review article › peer-review

19 Scopus citations

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.

Original language	English (US)
Pages (from-to)	1070-1075
Number of pages	6
Journal	Cardiology in the young
Volume	30
Issue number	8
DOIs	https://doi.org/10.1017/S1047951120001869
State	Published - 2020

Keywords

Fontan
improving outcomes
registry
single ventricle

ASJC Scopus subject areas

Pediatrics, Perinatology, and Child Health
Cardiology and Cardiovascular Medicine

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10.1017/S1047951120001869

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Alsaied, T., Allen, K. Y., Anderson, J. B., Anixt, J. S., Brown, D. W., Cetta, F., Cordina, R., D'Udekem, Y., Didier, M., Ginde, S., Di Maria, M. V., Eversole, M., Goldberg, D., Goldstein, B. H., Hoffmann, E., Kovacs, A. H., Lannon, C., Lihn, S., Lubert, A. M., ... Schumacher, K. (2020). The Fontan outcomes network: First steps towards building a lifespan registry for individuals with Fontan circulation in the United States. Cardiology in the young, 30(8), 1070-1075. https://doi.org/10.1017/S1047951120001869

Alsaied, T, Allen, KY, Anderson, JB, Anixt, JS, Brown, DW, Cetta, F, Cordina, R, D'Udekem, Y, Didier, M, Ginde, S, Di Maria, MV, Eversole, M, Goldberg, D, Goldstein, BH, Hoffmann, E, Kovacs, AH, Lannon, C, Lihn, S, Lubert, AM, Marino, BS, Mullen, E, Pickles, D, Rathod, RH, Rychik, J, Tweddell, JS, Wooton, S, Wright, G, Younoszai, A, Glenn, T, Wilmoth, A & Schumacher, K 2020, 'The Fontan outcomes network: First steps towards building a lifespan registry for individuals with Fontan circulation in the United States', Cardiology in the young, vol. 30, no. 8, pp. 1070-1075. https://doi.org/10.1017/S1047951120001869

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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.",

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AU - Anixt, Julia S.

AU - Brown, David W.

AU - Cetta, Frank

AU - Cordina, Rachael

AU - D'Udekem, Yves

AU - Didier, Meghan

AU - Ginde, Salil

AU - Di Maria, Michael V.

AU - Eversole, Michelle

AU - Goldberg, David

AU - Goldstein, Bryan H.

AU - Hoffmann, Erin

AU - Kovacs, Adrienne H.

AU - Lannon, Carole

AU - Lihn, Stacey

AU - Lubert, Adam M.

AU - Marino, Bradley S.

AU - Mullen, Emily

AU - Pickles, Diane

AU - Rathod, Rahul H.

AU - Rychik, Jack

AU - Tweddell, James S.

AU - Wooton, Sharyl

AU - Wright, Gail

AU - Younoszai, Adel

AU - Glenn, Tom

AU - Wilmoth, Alicia

AU - Schumacher, Kurt

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

Abstract

Keywords

ASJC Scopus subject areas

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