Creating a National Congenital Heart Disease (CHD) “Knowledge Bank”

This project seeks to develop a new piece of research infrastructure called the “CHD Knowledge Bank” by linking three existing data sources: The National CHD Registry, The Kids Heart Biobank, and Administrative Health data. The infrastructure will consist of two components:

• A securely held “data rich” resource of linked information, protected and accessible to scientists and researchers.
• An open access web-based resource to provide information and education for consumers (CHD patients, families, carers), doctors and other health care professionals and to health service planners.

The primary objective will be to establish a novel infrastructure to act as a “one stop shop” for all the major CHD stakeholders, to improve health and educational outcomes for this large group of affected Australians with chronic health needs. This CHD Knowledge Bank will improve our understanding, research, and ultimately, translate into better CHD management in the future. It can also improve the pathway to successful Clinical Trials in CHD.

This project seeks to develop a new piece of research infrastructure called the “CHD Knowledge Bank” by linking three existing data sources: The National CHD Registry, The Kids Heart Biobank, and Administrative Health data.

Nationally and indeed worldwide, there is a dearth of critical information about the important area of CHD; for example, prevalence, burden of disease, outcomes, genetic causes and access to care. Data from large numbers of patients are urgently needed, and these data need to be “linked” to outcomes to generate meaningful information. Until recently, large CHD registries and biobanks did not exist. There is currently no comprehensive, coordinated and accessible CHD resource, anywhere in the world.