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RESEARCH ARTICLE
Contents Vol 49(2)

State- and territory-based differences that impede the establishment of a harmonised national registry

Larissa K. Lloyd A B C , Calum Nicholson A B C , Geoff Strange A B C and David S. Celermajer A B C *
+ Author Affiliations
- Author Affiliations

A Clinical Research Group, Heart Research Institute, Sydney, NSW 2042, Australia.

B Cardiology Department, Royal Prince Alfred Hospital, Level 6, Building 75, Missenden Road, Camperdown, Sydney, NSW 2050, Australia.

C Faculty of Medicine, The University of Sydney, Sydney, NSW 2050, Australia.

* Correspondence to: david.celermajer@health.nsw.gov.au

Australian Health Review 49, AH24338 https://doi.org/10.1071/AH24338
Submitted: 10 December 2024  Accepted: 27 January 2025  Published: 11 February 2025

© 2025 The Author(s) (or their employer(s)). Published by CSIRO Publishing on behalf of AHHA.

Abstract

Objective

This paper aims to identify and describe legislative and administrative barriers to hospital participation and national data linkage for the National Australian Congenital Heart Disease (CHD) Registry.

Methods

A narrative review based on the National Australian 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 barriers that could not be overcome, reported by jurisdiction.

Conclusions

There is a pressing need for greater harmonisation of state-based legislation governing research and harmonisation of administration to reduce duplication. Substantial state-based differences hinder the establishment of a truly national registry.

Keywords: congenital heart disease, database, disease registry, epidemiology.

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