Operational and Ethical Considerations for a National Adult Congenital Heart Disease Database.
Operational and Ethical Considerations for a National Adult Congenital Heart Disease Database.
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DOI：
10.1161/jaha.121.022338
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发表时间：
2022-04-05
影响因子：
5.4
通讯作者：
Gurvitz, Michelle
中科院分区：
文献类型：
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作者：
Bradley, Elisa A.;Khan, Abigail;McNeal, Demetria M.;Bravo-Jaimes, Katia;Khanna, Amber;Cook, Stephen;Opotowsky, Alexander R.;John, Anitha;Lee, Marc;Pasquali, Sara;Daniels, Curt J.;Pernick, Michael;Kirkpatrick, James N.;Gurvitz, Michelle
随着越来越多的成年人患有先天性心脏病，需要更好地了解长期并发症和共病将变得越来越重要。改善所有患者的早期和晚期成人护理和生存公平地需要准确，及时和全面的数据来支持研究和基于质量的举措。成人先天性心脏病的国家数据收集需要一个健全的基础，强调核心伦理原则，承认患者和临床医生的观点，促进国家合作。在本文件中，我们研究这些基本原则，并提供建议，为国家ACHD数据收集制定一个道德上负责和包容性的框架。
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.