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Development of the data registry for the Cardiac Neurodevelopmental Outcome Collaborative

Published online by Cambridge University Press:  19 May 2023

Anjali Sadhwani Open the ORCID record for Anjali Sadhwani [Opens in a new window] ,
Erica Sood Open the ORCID record for Erica Sood [Opens in a new window] ,
Andrew H. Van Bergen ,
Dawn Ilardi Open the ORCID record for Dawn Ilardi [Opens in a new window] ,
Jacqueline H. Sanz ,
J. William Gaynor ,
Michael Seed Open the ORCID record for Michael Seed [Opens in a new window] ,
Cynthia M. Ortinau ,
Bradley S. Marino  and
Thomas A. Miller
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Anjali Sadhwani*
Affiliation:
Department of Psychiatry and Behavioral Sciences, Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA
Erica Sood
Affiliation:
Nemours Cardiac Center, Nemours Children’s Health, Wilmington, DE, USA Department of Pediatrics, Thomas Jefferson University, Philadelphia, PA, USA
Andrew H. Van Bergen
Affiliation:
Advocate Children’s Heart Institute, Advocate Children’s Hospital, Oak Lawn, IL, USA
Dawn Ilardi
Affiliation:
Department of Rehabilitation Medicine, Emory University, and the Department of Neuropsychology, Children’s Healthcare of Atlanta, Atlanta, GA, USA
Jacqueline H. Sanz
Affiliation:
Division of Neuropsychology, Children’s National Hospital, and Departments of Psychiatry and Behavioral Science and Pediatrics, George Washington University School of Medicine, Washington, DC, USA
J. William Gaynor
Affiliation:
Division of Cardiothoracic Surgery, Department of Surgery, Children’s Hospital of Philadelphia, and the Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA
Michael Seed
Affiliation:
Division of Cardiology, Hospital for Sick Children, Toronto, Canada
Cynthia M. Ortinau
Affiliation:
Department of Pediatrics, Washington University in St. Louis. St. Louis. MO, USA
Bradley S. Marino
Affiliation:
Department of Pediatric Cardiology, Cleveland Clinic Children’s, Cleveland, OH, USA
Thomas A. Miller
Affiliation:
Division of Pediatric Cardiology, Maine Medical Center, Portland, ME, USA
Michael Gaies
Affiliation:
Heart Institute, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA
Adam R. Cassidy
Affiliation:
Department of Psychiatry and Behavioral Sciences, Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA Departments of Psychiatry and Psychology, and Pediatric and Adolescent Medicine, Mayo Clinic, Rochester, MN, USA
Janet E. Donohue
Affiliation:
Cardiac Networks United Data Core, University of Michigan, Ann Arbor, MI, USA
Amy Ardisana
Affiliation:
ArborMetrix, Ann Arbor, MI, USA
David Wypij
Affiliation:
Department of Cardiology, Boston Children’s Hospital, Department of Pediatrics, Harvard Medical School, and Department of Biostatistics, Harvard T.H. Chan School of Public Health, Boston, MA, USA
Caren S. Goldberg
Affiliation:
Department of Pediatrics, C.S. Mott Children’s Hospital, University of Michigan, Ann Arbor, MI, USA
*
Corresponding author: A. Sadhwani; Email: anjali.sadhwani@childrens.harvard.edu
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Abstract

Children with congenital heart disease (CHD) can face neurodevelopmental, psychological, and behavioural difficulties beginning in infancy and continuing through adulthood. Despite overall improvements in medical care and a growing focus on neurodevelopmental screening and evaluation in recent years, neurodevelopmental disabilities, delays, and deficits remain a concern. The Cardiac Neurodevelopmental Outcome Collaborative was founded in 2016 with the goal of improving neurodevelopmental outcomes for individuals with CHD and pediatric heart disease. This paper describes the establishment of a centralised clinical data registry to standardize data collection across member institutions of the Cardiac Neurodevelopmental Outcome Collaborative. The goal of this registry is to foster collaboration for large, multi-centre research and quality improvement initiatives that will benefit individuals and families with CHD and improve their quality of life. We describe the components of the registry, initial research projects proposed using data from the registry, and lessons learned in the development of the registry.

Keywords

cardiacdataregistryneurodevelopment
Type
Original Article
Information
Cardiology in the Young , Volume 34 , Issue 1 , January 2024 , pp. 79 - 85
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Copyright
© The Author(s), 2023. Published by Cambridge University Press

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