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A call for a National Congenital Heart Disease Registry was advised after an extensive review of CHD management across Australia, published in the HeartKids Australia White paper1.  A feasibility “study” of the CHD registry was executed and the CHAANZ Consortium was established to work toward the planning of a Regional Congenital Heart Disease Registry for Australia and New Zealand covering the spectrum of life for those with Congenital heart disease. A call for a lifetime regional registry was published in Heart Lung and Circulation in August 20162.

The Seven key objectives for the ANZ CHD registry identified are:

1. Patient Benefit – This is the key objective, focusing on the understanding of:

a) Early outcomes

b) Transition

c) Late outcomes 

d) Access to follow-up

2. Benchmarking and quality 

3. Service planning

4. Natural and unnatural history

5. Clinical research 

6. Transition to follow-up

7. Australia and New Zealand Reputation


The projects currently being conducted by CHAANZ include:

Phase 1 - Epidemiology of congenital heart disease in Australia and New Zealand

Phase 2 - National Congenital Heart Disease Survey

Phase 3 - Australia and New Zealand Congenital Heart Disease Registry





References: 1. Leggat S. Childhood Heart Disease in Australia: current practices and future needs.Feb 2011. White Paper for the Paediatric and congenital council of the CSANZ and Heart Kids Australia. 2. Celermajer, David et al. Congenital Heart Disease Requires a Lifetime Continuum of Care: A Call for a Regional Registry, Heart, Lung and Circulation , Volume 25 , Issue 8 , 750 - 754