Development of the data registry for the Cardiac Neurodevelopmental Outcome Collaborative

Anjali Sadhwani, Erica Sood, Andrew H. Van Bergen, Dawn Ilardi, Jacqueline H. Sanz, J. William Gaynor, Michael Seed, Cynthia M. Ortinau, Bradley S. Marino, Thomas A. Miller, Michael Gaies, Adam R. Cassidy, Janet E. Donohue, Amy Ardisana, David Wypij, Caren S. Goldberg

Research output: Contribution to journalArticlepeer-review

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.

Original languageEnglish
Pages (from-to)79-85
Number of pages7
JournalCardiology in the young
Volume34
Issue number1
DOIs
StatePublished - Jan 19 2024

Keywords

  • cardiac
  • data
  • neurodevelopment
  • registry

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