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There is an overall lack of understanding of congenital heart disease (CHD), and this is preventing clinicians and health systems from providing CHD patients and their carers with optimal management of their condition throughout their lives.

This project is working to establish a unique National CHD Registry for 25,000 CHD Australians and develop it into a world-class resource with profound translational impact. The registry’s dataset will 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.

In addition, there will be a focused profile of 2,400 CHD patients and 1,200 carers to understand:

  • 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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