AI Article Synopsis
- As more adults with congenital heart disease live longer, we need to identify and understand the long-term complications associated with their condition.
- To enhance care and survival rates for these patients, comprehensive and timely data is essential for guiding research and improving quality of care.
- Establishing a national data collection system for adult congenital heart disease requires adherence to ethical principles that consider both patient and clinician viewpoints while encouraging collaboration across the nation.
Article 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.
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Source |
|---|---|
| http://www.ncbi.nlm.nih.gov/pmc/articles/PMC9075495 | PMC |
| http://dx.doi.org/10.1161/JAHA.121.022338 | DOI Listing |
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