CHAANZ has produced a growing body of publications that aim to advance understanding of congenital heart disease. These works include research generated directly from the CHAANZ CHD Registry, offering new insights into patient demographics, clinical care, and long-term outcomes. Additional studies include outcomes-focused research that examines experiences and burden of CHD, as well as the patient engagement survey, highlighting lived experience and preferences to improve person-centred care. Through these publications, CHAANZ works to inform clinical practice, guide policy, and improve quality of life for people living with CHD. Click on the references below to read more.

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Registry Data:

1. Nicholson C, Strange G, Ayer J, Cheung M, Grigg L, Justo R, et al. A national Australian Congenital Heart Disease registry; methods and initial results. Int J Cardiol Congenit Heart Dis. 2024;17:100538.

2. Lloyd L, Nicholson C, Strange G, Cordina R, Celermajer DS, Cheung MMH. Excellent medium to long term outcomes after cardiac surgery for moderate and complex congenital heart disease, regardless of geographic location. International Journal of Cardiology Congenital Heart Disease. 2025;20:100579.

3. Chami J, Moore BM, Nicholson C, Cordina R, Baker D, Celermajer DS. Outcomes of permanent pacemakers and implantable cardioverter-defibrillators in an adult congenital heart disease population. Int J Cardiol Congenit Heart Dis. 2024;15:100490.

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Outcomes and Burdens for CHD

1. Badal T, Nicholson C, Ayer J, Cheung M, Grigg L, Celermajer DS, et al. A Detailed Profiling Study from the Australian National Congenital Heart Disease Registry: Rationale and Design. International Journal of Cardiology Congenital Heart Disease. 2025:100595.

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Patient Engagment Survey

1. Lloyd L, Ruban S, Badal T, Strange G, Celermajer DS, Bonner C. Living with congenital heart disease: a qualitative study to explore psychosocial impacts in adulthood. International Journal of Cardiology Congenital Heart Disease. 2025;21:100610.

2. Ruban S, Lloyd L, Badal T, Strange G, Celermajer DS, Bonner C. Understanding barriers and facilitators of transition to adult care among adolescents with Congenital Heart Disease (CHD): A qualitative study of adult perspectives. Patient Educ Couns. 2025;142:109364.

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Developing the Registry:​

1. Chami J, Nicholson C, Strange G, Cordina R, Celermajer DS. National and regional registries for congenital heart diseases: Strengths, weaknesses and opportunities. Int J Cardiol. 2021.

2. Chami J, Strange G, Nicholson C, Celermajer DS. Towards a Unified Coding System for Congenital Heart Diseases. Circ Cardiovasc Qual Outcomes. 2021;14(7):e008216.

3. Chami J, Strange G, Baker D, Cordina R, Grigg L, Celermajer DS, et al. Algorithmic complexity stratification for congenital heart disease patients. International Journal of Cardiology Congenital Heart Disease. 2023;11:100430.

4. Chami J, Nicholson C, Baker D, Cordina R, Strange G, Celermajer DS. Improved complexity stratification in congenital heart disease; the impact of including procedural data on accuracy and reliability. International Journal of Cardiology Congenital Heart Disease. 2024;16:100510.

5. Lloyd L, Nasir R, Nicholson C, Strange G, Celermajer DS. Obstacles in establishing a national disease registry in Australia: lessons from the development of the CHAANZ Congenital Heart Disease Registry. Aust Health Rev. 2023:410-7.

6. Lloyd LK, Nicholson C, Strange G, Celermajer DS. The burdensome logistics of data linkage in Australia - the example of a national registry for congenital heart disease. Aust Health Rev. 2023.

7. ​Lloyd LK, Nicholson C, Strange G, Celermajer DS. State- and territory-based differences that impede the establishment of a harmonised national registry. Aust Health Rev. 2025.

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