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 journalReview articlepeer-review

6 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 languageEnglish (US)
Pages (from-to)1070-1075
Number of pages6
JournalCardiology in the young
Volume30
Issue number8
DOIs
StatePublished - 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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