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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*
Department of Psychiatry and Behavioral Sciences, Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA
Erica Sood
Nemours Cardiac Center, Nemours Children’s Health, Wilmington, DE, USA Department of Pediatrics, Thomas Jefferson University, Philadelphia, PA, USA
Andrew H. Van Bergen
Advocate Children’s Heart Institute, Advocate Children’s Hospital, Oak Lawn, IL, USA
Dawn Ilardi
Department of Rehabilitation Medicine, Emory University, and the Department of Neuropsychology, Children’s Healthcare of Atlanta, Atlanta, GA, USA
Jacqueline H. Sanz
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
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
Division of Cardiology, Hospital for Sick Children, Toronto, Canada
Cynthia M. Ortinau
Department of Pediatrics, Washington University in St. Louis. St. Louis. MO, USA
Bradley S. Marino
Department of Pediatric Cardiology, Cleveland Clinic Children’s, Cleveland, OH, USA
Thomas A. Miller
Division of Pediatric Cardiology, Maine Medical Center, Portland, ME, USA
Michael Gaies
Heart Institute, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA
Adam R. Cassidy
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
Cardiac Networks United Data Core, University of Michigan, Ann Arbor, MI, USA
Amy Ardisana
ArborMetrix, Ann Arbor, MI, USA
David Wypij
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
Department of Pediatrics, C.S. Mott Children’s Hospital, University of Michigan, Ann Arbor, MI, USA
Corresponding author: A. Sadhwani; Email:


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.

Original Article
© The Author(s), 2023. Published by Cambridge University Press

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