The origins and development of the cardiac neurodevelopment outcome collaborative: Creating innovative clinical, quality improvement, and research opportunities

Bradley S. Marino*, Erica Sood, Adam R. Cassidy, Thomas A. Miller, Jacqueline H. Sanz, David Bellinger, Jane Newburger, Caren S. Goldberg

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract

Compared to the general population, individuals with complex congenital heart disease are at increased risk for deficits in cognitive, neurodevelopmental, psychosocial, and physical functioning, resulting in a diminished health-related quality of life. These deficits have been well described over the past 25 years, but significant gaps remain in our understanding of the best practices to improve neurodevelopmental and psychosocial outcomes and health-related quality of life for individuals with paediatric and congenital heart disease. Innovative clinical, quality improvement, and research opportunities with collaboration across multiple disciplines and institutions were needed to address these gaps. The Cardiac Neurodevelopmental Outcome Collaborative was founded in 2016 with a described mission to determine and implement best practices of neurodevelopmental and psychosocial services for individuals and their families with paediatric and congenital heart disease through clinical, quality improvement, and research initiatives. The vision is to be a multi-centre, multi-national, multi-disciplinary group of healthcare professionals committed to working together and partnering with families to optimise neurodevelopmental outcomes for individuals with paediatric and congenital heart disease through clinical, quality, and research initiatives, intending to maximise quality of life for every individual across the lifespan. This manuscript describes the development and organisation of the Cardiac Neurodevelopmental Outcome Collaborative.

Original languageEnglish (US)
Pages (from-to)1597-1602
Number of pages6
JournalCardiology in the young
Volume30
Issue number11
DOIs
StatePublished - Nov 2020

Keywords

  • Congenital heart disease
  • neurodevelopmental outcomes
  • psychosocial outcomes
  • quality improvement
  • quality of life

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Cardiology and Cardiovascular Medicine

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