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

^*Corresponding author for this work

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

24 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

Funding

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’s Heart Association of Cincinnati for their financial support of the design of the Fontan Outcome Network.

Keywords

Fontan
improving outcomes
registry
single ventricle

ASJC Scopus subject areas

Pediatrics, Perinatology, and Child Health
Cardiology and Cardiovascular Medicine

Access to Document

10.1017/S1047951120001869

Cite this

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

@article{14e643a919a54500b4e94b70e739120b,

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",

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",

}

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

TY - JOUR

T1 - The Fontan outcomes network

T2 - First steps towards building a lifespan registry for individuals with Fontan circulation in the United States

AU - Alsaied, Tarek

AU - Allen, Kiona Y.

AU - Anderson, Jeffrey B.

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

PY - 2020

Y1 - 2020

N2 - 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.

AB - 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.

KW - Fontan

KW - improving outcomes

KW - registry

KW - single ventricle

UR - http://www.scopus.com/inward/record.url?scp=85087857621&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85087857621&partnerID=8YFLogxK

U2 - 10.1017/S1047951120001869

DO - 10.1017/S1047951120001869

M3 - Review article

C2 - 32635947

AN - SCOPUS:85087857621

SN - 1047-9511

VL - 30

SP - 1070

EP - 1075

JO - Cardiology in the young

JF - Cardiology in the young

IS - 8

ER -

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

Abstract

Funding

Keywords

ASJC Scopus subject areas

Access to Document

Other files and links

Fingerprint

Cite this