Operational and Ethical Considerations for a National Adult Congenital Heart Disease Database.
J Am Heart Assoc
; 11(7): e022338, 2022 04 05.
Article
in En
| MEDLINE
| ID: mdl-35301853
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.
Key words
Full text:
1
Collection:
01-internacional
Database:
MEDLINE
Main subject:
Heart Defects, Congenital
Type of study:
Diagnostic_studies
Aspects:
Ethics
Limits:
Adult
/
Humans
Language:
En
Journal:
J Am Heart Assoc
Year:
2022
Document type:
Article