Development of the data registry for the Cardiac Neurodevelopmental Outcome Collaborative


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.
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.
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.

Document Type

Journal Article

Publication Date



Cardiology in the young




cardiac; data; neurodevelopment; registry


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.


Psychiatry and Behavioral Sciences