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Project overview

We have created one of the world’s best registries for children and adults with CHD across Australia and New Zealand. The data represents the most comprehensive cohort collected for the Australian CHD population thus far and is comparable with the largest contemporary CHD registries around the world.

In addition to the development of the ANZ Congenital Heart Disease Registry, the Clinical Research Group has also expanded its research into the burdens and outcomes of congenital heart disease. This project creates a focused profile of almost 2,000 congenital heart disease patients to better describe the outcomes, experiences and burden of CHD across the life-course, generating better evidence for optimisation of “whole of life” care for these subjects.

Project aim

Our work on congenital heart disease (CHD) has the potential to revolutionise care for the “whole of life” for CHD patients.

Project background

We have created one of the world’s best registries for children and adults with CHD across Australia and New Zealand. The data represents the most comprehensive cohort collected for the Australian CHD population thus far and is comparable with the largest contemporary CHD registries around the world.

In addition to the development of the ANZ Congenital Heart Disease Registry, the Clinical Research Group has also expanded its research into the burdens and outcomes of congenital heart disease. This project creates a focused profile of almost 2,000 congenital heart disease patients to better describe the outcomes, experiences and burden of CHD across the life-course, generating better evidence for optimisation of “whole of life” care for these subjects.

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