In addition to providing increased resources for the development of the ANZ Congenital Heart Disease Registry, the MRFF funding will also allow CHAANZ to expand its research in to the burdens and outcomes of congenital heart disease. This project aims to create a focused profile of 2,400 congenital heart disease patients and 1,200 carers to better describe the outcomes, experiences and burden of CHD across the life-course to generate better evidence for optimisation of “whole of life” care for these subjects.

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To develop this focused profile, this project will focus on:

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• Health Care Delivery & Management: By documenting and comparing the pattern and delivery of health care for specific forms of CHD, we will assess the adequacy and equity of access to specialist CHD services from a local to an Australia-wide perspective.

• The Patient & Carer Journey: We will examine the burden of CHD for patients, carers and families, and their interactions with the health care system from childhood to adult life.

• Physiological & Psychological Impact: We will determine the impact of CHD across the life-course from the perspective of the patient and their carer(s) with a specific focus on their physical health, mental health, neurodevelopment, quality of life and interactions with the health care system.

• Determinants of Outcome: Combining all study profiling and outcome data, we will determine the socio-demographic, health service, clinical and psychosocial determinants of – a) Premature mortality; b) High healthcare utilisation; c) Sub-optimal neuropsychological development and/or mental health; d) Poor quality of life (patient and carer); and e) Loss-to-follow-up with specialist services (of all ages, but with a specific focus on paediatric to adult “transition” of care).

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This project is being set up, with staff being appointed and ethics/governance approvals being obtained. Recruitment of congenital heart disease patients is expected to begin in the first half of 2021.