Operational and Ethical Considerations for a National Adult Congenital Heart Disease Database

Elisa A. Bradley, Abigail Khan, Demetria M. McNeal, Katia Bravo-Jaimes, Amber Khanna, Stephen Cook, Alexander R. Opotowsky, Anitha John, Marc Lee, Sara Pasquali, Curt J. Daniels, Michael Pernick, James N. Kirkpatrick, Michelle Gurvitz

Research output: Contribution to journalArticlepeer-review

Abstract

As more adults survive with congenital heart disease, the need to better understand the long‐term complications, and comorbid disease will become increasingly important. Improved care and survival into the early and late adult years for all patients equitably requires accurate, timely, and comprehensive data to support research and quality‐based initiatives. National data collection in adult congenital heart disease will require a sound foundation emphasizing core ethical principles that acknowledge patient and clinician perspectives and promote national collaboration. In this document we examine these foundational principles and offer suggestions for developing an ethically responsible and inclusive framework for national ACHD data collection.

Original languageEnglish (US)
Article numbere022338
JournalJournal of the American Heart Association
Volume11
Issue number7
DOIs
StatePublished - Apr 5 2022
Externally publishedYes

Keywords

  • ACHD
  • Big Data
  • Ethics
  • Quality

ASJC Scopus subject areas

  • Cardiology and Cardiovascular Medicine

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