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Development of the data registry for the Cardiac Neurodevelopmental Outcome Collaborative

Anjali Sadhwani1, Erica Sood2,3, Andrew H Van Bergen4

  • 1Department of Psychiatry and Behavioral Sciences, Boston Children's Hospital, Harvard Medical School, Boston, MA, USA.

Cardiology in the Young
|May 19, 2023
PubMed

Insights

A new data registry aims to improve neurodevelopmental outcomes for children with congenital heart disease (CHD). Standardized data collection will support multi-center research and enhance quality of life for CHD patients.

Area of Science:

  • Pediatric Cardiology
  • Neurodevelopmental Pediatrics
  • Clinical Data Management

Background:

  • Children with congenital heart disease (CHD) experience significant neurodevelopmental, psychological, and behavioral challenges.
  • Despite medical advances, neurodevelopmental deficits persist in individuals with CHD.
  • Early identification and intervention are crucial for improving long-term outcomes.

Purpose of the Study:

  • Establish a centralized clinical data registry for the Cardiac Neurodevelopmental Outcome Collaborative (CNOC).
  • Standardize data collection across multiple institutions to facilitate research and quality improvement.
  • Enhance the quality of life for individuals with CHD and their families.

Main Methods:

  • Development of a centralized clinical data registry.
  • Standardization of data collection protocols across CNOC member institutions.
  • Description of registry components and proposed initial research projects.

Main Results:

  • Successful establishment of a centralized clinical data registry.
  • Defined components and initial research directions for the registry.
  • Identified lessons learned during the registry development process.

Conclusions:

  • The CNOC data registry provides a foundation for collaborative, multi-center research in CHD neurodevelopment.
  • Standardized data will drive quality improvement initiatives and enhance patient care.
  • This initiative is expected to significantly benefit individuals and families affected by CHD.

Keywords:
cardiacdataneurodevelopmentregistry

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