The Australian Genetic Heart Disease Registry cohorts will be available to Australian research groups in the future. If you would like to discuss prospective projects, please email the Registry Coordinator.
The Registry Advisory Committee and any relevant human research ethics committees must approve all research proposals.
At present biological samples from registrants are not collected, though this may be considered in the future.
The Registry was initially established as part of a PhD project. This thesis has now been submitted but this valuable project has continued as part of our efforts to help improve our understanding of genetic heart disease in Australia.
Specifically, the aims of the Registry are:
- Collection of data about families with inherited heart diseases, this includes information about their medical history, current symptoms/medications, family history, genetic testing results and frequency of visits to their cardiologist.
- Create awareness and provide a reliable source of information to families and health professionals.
- Establish a large genetic heart disease cohort for use by approved Australian research groups, with the ultimate goal of improved treatment options and patient care.