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ANZ Congenital Heart Disease Registry

The National Congenital Heart Disease survey is the first step towards addressing current research questions and developing solutions to help all patients with congenital heart disease, irrespective of where they sit on the disease continuum. It is the first step in developing a Congenital Heart Disease Registry for Australia and New Zealand that is today becoming a mandatory tool to provide best care to a growing population.

In this project, CHAANZ will be working with each major congenital heart disease centre in Australia and New Zealand to develop the ANZ Congenital Heart Disease Registry.

This will require ethics approval and an automated process (individualised for each site) to allow seamless data extraction from each centre’s current databases into the new ANZ Congenital Heart Disease Registry.

This will allow continued use of each site’s current database and allow a “common data set” to be migrated to a new and user-friendly bi-national CHD database. We propose to work toward assisting each major Australian and New Zealand Congenital Heart Disease Unit to run and manage the Registry, from 2018.