ANZ CHD Registry

CHAANZ advocates for improvements in care for Congenital Heart Disease in Australia and New Zealand1. A Congenital Heart Disease Registry for Australia and New Zealand is becoming a mandatory tool to provide best care to a growing population2.

In this project, CHAANZ is working with each major congenital heart disease centre in Australia and New Zealand to develop the ANZ Congenital Heart Disease Registry. This project has obtained ethics approval and funding from the MRFF has provided the resources to appoint staff at the major congenital heart disease centres across Australia to help populated the registry.

We are developing an individualized, automated processes to allow seamless data extraction from each centre’s current databases into the new ANZ Congenital Heart Disease Registry. Data extraction in New South Wales and Victoria has begun already, with the rest of our partners preparing to provide data throughout 2021.

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 are currently assisting each major Australian and New Zealand Congenital Heart Disease Unit to run and manage the Registry.

References:​

  1. Nicolae M, Gentles T, Strange G, Tanous D, Disney P, Bullock A, Grigg L, Chen SSM, Pressley L, Cordina R, Hornung T, O'Donnell C, Celermajer DS. Adult Congenital Heart Disease in Australia and New Zealand: A Call for Optimal Care. Heart Lung Circ. 2019 Apr;28(4):521-529. doi: 10.1016/j.hlc.2018.10.015. Epub 2018 Oct 28. PMID: 30392984.

  2. Celermajer D, Strange G, Cordina R, Selbie L, Sholler G, Winlaw D, Alphonso N, Justo R, Nicholae M, Kasparian N, Weintraub RG, Cheung M, Grigg LE, Brizard CP, Wheaton G, Disney P, Stewart S, Bullock A, Ramsay J, Gentles T, d'Udekem Y. Congenital Heart Disease Requires a Lifetime Continuum of Care: A Call for a Regional Registry. Heart Lung Circ. 2016 Aug;25(8):750-4. doi: 10.1016/j.hlc.2016.03.018. Epub 2016 Apr 25. PMID: 27210301.