Just Accepted
This article has been peer reviewed and accepted for publication. It is in production and has not been edited, so may differ from the final published form.
State and territory-based differences that impede the establishment of a harmonised national registry.
Abstract
Objective: This paper aims to identify and describe legislative and administrative barriers to hospital participation and national data linkage for the National Congenital Heart Disease (CHD) Registry. Methods: A narrative review based on the National CHD Registry experience of establishing participating hospital sites and national linkages, associated with each jurisdiction. Results: There were numerous identified barriers that could be overcome with additional resources/time, and those barriers that could not, reported by jurisdiction. Conclusions: There is a pressing need for greater harmonization of state-based legislation governing research, harmonization of administration to reduce duplication. Substantial state-based differences hinder the establishment of a truly national registry.
AH24338 Accepted 27 January 2025
© CSIRO 2025
