| Autor: |
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 |
| Jazyk: |
angličtina |
| Rok vydání: |
2022 |
| Předmět: |
|
| Zdroj: |
Journal of the American Heart Association: Cardiovascular and Cerebrovascular Disease, Vol 11, Iss 7 (2022) |
| Druh dokumentu: |
article |
| ISSN: |
2047-9980 |
| DOI: |
10.1161/JAHA.121.022338 |
| Popis: |
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. |
| Databáze: |
Directory of Open Access Journals |
| Externí odkaz: |
|
Plný text