DEVELOPING THE ANZ CHD REGISTRY

Developing the ANZ CHD Registry

The development of the ANZ CHD Registry has involved review of existing infrastructure1, as well as optimisation of coding systems used in congenital heart disease2 and complexity stratification algorithms used to determine CHD complexity3,4.

We have reported the difficulties in the set up of the Registry5, outlined the complex process for undergoing data linkage6, and detailed the state- and territory-based differences that challenge the development of a harmonised disease registry such as the ANZ CHD Registry7.

Click on the references below to read these papers.

References:

Chami J, Nicholson C, Strange G, Cordina R, Celermajer DS. National and regional registries for congenital heart diseases: Strengths, weaknesses and opportunities. Int J Cardiol. 2021.
Chami J, Strange G, Nicholson C, Celermajer DS. Towards a Unified Coding System for Congenital Heart Diseases. Circ Cardiovasc Qual Outcomes. 2021;14(7):e008216.
Chami J, Strange G, Baker D, Cordina R, Grigg L, Celermajer DS, et al. Algorithmic complexity stratification for congenital heart disease patients. International Journal of Cardiology Congenital Heart Disease. 2023;11:100430.
Chami J, Nicholson C, Baker D, Cordina R, Strange G, Celermajer DS. Improved complexity stratification in congenital heart disease; the impact of including procedural data on accuracy and reliability. International Journal of Cardiology Congenital Heart Disease. 2024;16:100510.
Lloyd L, Nasir R, Nicholson C, Strange G, Celermajer DS. Obstacles in establishing a national disease registry in Australia: lessons from the development of the CHAANZ Congenital Heart Disease Registry. Aust Health Rev. 2023:410-7.
Lloyd LK, Nicholson C, Strange G, Celermajer DS. The burdensome logistics of data linkage in Australia - the example of a national registry for congenital heart disease. Aust Health Rev. 2023.
Lloyd LK, Nicholson C, Strange G, Celermajer DS. State- and territory-based differences that impede the establishment of a harmonised national registry. Aust Health Rev. 2025.