Our research

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.

Appearing in Heart and Lung Circulation3, a Call to Action was published to recommend all adults with non-simple congenital heart disease should be seen regularly in an adult congenital heart centre facility. The publication details the size of the problem and recommends solutions to be implemented.

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

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

    1. Early outcomes

    2. Transition

    3. Late outcomes 

    4. 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. ANZ Reputation

Following these reviews of congenital heart disease management in Australia, a national survey of congenital heart disease was conducted to help understand the experiences and needs of people with congenital heart disease. This survey was published in Heart Lung Circulation in 20194.

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

  3. Nicolae M, Gentles T, Strange G, Tanous D, Disney P, Bullock A, et al. Adult Congenital Heart Disease in Australia and New Zealand : A Call for Optimal Care. Hear Lung Circ. 2019;28(4):521–9.

  4. Strange G, Stewart S, Farthing M, Kasparian NA, Selbie L, Donnell CO, et al. Living With, and Caring for, Congenital Heart Disease in Australia: Insights From the Congenital Heart Alliance of Australia and New Zealand Online Survey. Heart Lung Circ. 2019;(2018):1-7.