Guest Editors
Dr. Michael Rebolledo
Email: mrebolle@uthsc.edu
Affiliation: Le Bonheur Children's Hospital, The University of Tennessee Health Science Center College of Medicine, Memphis, Tennessee 38103, USA
Homepage:
Research Interests: Congenital and acquired pediatric heart disease
Dr. Katherine (Katie) Bates
Email: kebates@med.umich.edu
Affiliation: C.S. Mott Children's Hospital, Ann Arbor 48109, USA
Homepage:
Research Interests: Pediatric Cardiology, Pediatrics
Dr. Judson Moore
Email: judson.moore@hsc.utah.edu
Affiliation: Intermountain Health Primary Children's Hospital, Salt Lake City 84113, USA
Homepage:
Research Interests: Cardiology
Summary
This special issue will focus on the current landscape of registries in congenital heart disease (CHD). As many forms of severe CHD are relatively uncommon, registries play a critical role in quality improvement, research and advocacy. Each paper will discuss registry development, target population/scope, governance, strategic partners, current state, general adoption, participant feedback, outcome examples, data gaps, opportunities/challenges and future directions. There will also be a paper focusing on Cardiac Networks United which brings together under a shared governance many prominent registries in CHD which will cover similar subheadings. In addition, the potential and challenges of linking registries will be discussed. It will also review common challenges among registries with regard to infrastructure and data analytics capacity. The impact of artificial intelligence revolution will be examined. Each reader will gain tremendous knowledge and insight in the CHD registry space from this issue.
Keywords
Congenital Heart Disease (CHD), Registries, Quality Improvement, Research and Advocacy, Registry Development and Governance, Data Gaps and Opportunities
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