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
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
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