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

Published online by Cambridge University Press:  08 July 2020

Tarek Alsaied Open the ORCID record for Tarek Alsaied [Opens in a new window] ,
Kiona Y. Allen ,
Jeffrey B. Anderson ,
Julia S. Anixt ,
David W. Brown ,
Frank Cetta ,
Rachael Cordina ,
Yves D’udekem ,
Meghan Didier  and
Salil Ginde
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Tarek Alsaied*
Affiliation:
Heart Institute, Department of Pediatrics, Cincinnati Children’s Hospital Medical Center, University of Cincinnati, Cincinnati, OH, USA
Kiona Y. Allen
Affiliation:
Division of Cardiology, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA Department of Pediatrics, Feinberg Northwestern University School of Medicine, Chicago, IL, USA
Jeffrey B. Anderson
Affiliation:
Heart Institute, Department of Pediatrics, Cincinnati Children’s Hospital Medical Center, University of Cincinnati, Cincinnati, OH, USA
Julia S. Anixt
Affiliation:
Division of Developmental and Behavioral Pediatrics, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA Department of Pediatrics, University of Cincinnati, Cincinnati, OH, USA
David W. Brown
Affiliation:
Department of Cardiology, Boston Children’s Hospital, Boston, MA, USA Department of Pediatrics, Harvard Medical School, Boston, MA, USA
Frank Cetta
Affiliation:
Department of Pediatric Cardiology, The Mayo Clinic, Rochester, MN, USA
Rachael Cordina
Affiliation:
Royal Prince Alfred Hospital, Sydney, Australia
Yves D’udekem
Affiliation:
Children’s National Cardiac Surgery and Heart Institute, Washington, DC, USA
Meghan Didier
Affiliation:
Sisters by Heart Organization, El Segundo, CA, USA The National Pediatric Cardiology Quality Improvent Collaborative, Cincinnati, OH, USA
Salil Ginde
Affiliation:
Department of Cardiology, The Children’s Hospital of Wisconsin, Milwaukee, WI, USA
Michael V. Di Maria
Affiliation:
Heart Institute, Children’s Hospital Colorado, Department of Pediatrics, University of Colorado School of Medicine, Aurora, CO, USA
Michelle Eversole
Affiliation:
The Anderson Center for Health Systems Excellence, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA
David Goldberg
Affiliation:
Department of Pediatric Cardiology, The Children’s Hospital of Philadelphia, Philadelphia, PA, USA
Bryan H. Goldstein
Affiliation:
Heart Institute, UPMC Children’s Hospital of Pittsburgh, Department of Pediatrics, University of Pittsburgh School of Medicine, Pittsburgh, PA, USA
Erin Hoffmann
Affiliation:
Additional Ventures, Palo Alto, CA, USA
Adrienne H. Kovacs
Affiliation:
Knight Cardiovascular Institute, Oregon Health & Science University, Portland, OR, USA
Carole Lannon
Affiliation:
The Anderson Center for Health Systems Excellence, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA American Board of Pediatrics, Chapel Hill, NC, USA
Stacey Lihn
Affiliation:
Sisters by Heart Organization, El Segundo, CA, USA The National Pediatric Cardiology Quality Improvent Collaborative, Cincinnati, OH, USA
Adam M. Lubert
Affiliation:
Heart Institute, Department of Pediatrics, Cincinnati Children’s Hospital Medical Center, University of Cincinnati, Cincinnati, OH, USA
Bradley S. Marino
Affiliation:
Division of Cardiology, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA Department of Pediatrics, Feinberg Northwestern University School of Medicine, Chicago, IL, USA
Emily Mullen
Affiliation:
The Anderson Center for Health Systems Excellence, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA American Board of Pediatrics, Chapel Hill, NC, USA Data Management and Analysis Center, Division of Biostatistics and Epidemiology, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA
Diane Pickles
Affiliation:
One Brave Idea at American Heart Association, Boston, MA, USA
Rahul H. Rathod
Affiliation:
Department of Cardiology, Boston Children’s Hospital, Boston, MA, USA Department of Pediatrics, Harvard Medical School, Boston, MA, USA
Jack Rychik
Affiliation:
Department of Pediatric Cardiology, The Children’s Hospital of Philadelphia, Philadelphia, PA, USA
James S. Tweddell
Affiliation:
Heart Institute, Department of Pediatrics, Cincinnati Children’s Hospital Medical Center, University of Cincinnati, Cincinnati, OH, USA Department of Cardiothoracic Surgery, Cincinnati Children’s Hospital Medical Center, University of Cincinnati, Cincinnati, OH, USA
Sharyl Wooton
Affiliation:
The Anderson Center for Health Systems Excellence, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA American Board of Pediatrics, Chapel Hill, NC, USA
Gail Wright
Affiliation:
Department of Pediatric Cardiology, Stanford University, Palo Alto, CA, USA
Adel Younoszai
Affiliation:
Heart Institute, Children’s Hospital Colorado, Department of Pediatrics, University of Colorado School of Medicine, Aurora, CO, USA
Tom Glenn
Affiliation:
Rady Children’s Hospital, Department of Pediatric Cardiology, San Diego, California
Alicia Wilmoth
Affiliation:
Heart Institute, Department of Pediatrics, Cincinnati Children’s Hospital Medical Center, University of Cincinnati, Cincinnati, OH, USA
Kurt Schumacher
Affiliation:
Congenital Heart Center, C.S. Mott Children’s Hospital, University of Michigan, Ann Arbor, MI, USA
*
Author for correspondence: Tarek Alsaied, MD, Heart Institute, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Ave, Cincinnati, OH45229, USA. Phone: +513-652-1226. Fax: +513-636-3952. Email: [email protected]
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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.

Keywords

Fontanregistryimproving outcomessingle ventricle
Type
Review Article
Information
Cardiology in the Young , Volume 30 , Issue 8 , August 2020 , pp. 1070 - 1075
Copyright
© The Author(s), 2020. Published by Cambridge University Press

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Footnotes

*

Authors order is alphabetical.

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