The Registry and Research
One of the major aims of the Registry is to contribute to a better understanding of inherited heart diseases, and to ensure Australian research groups remain on the forefront of cardiac genetic research.
When enrolling, individuals are asked to select if they would like to be contacted regarding research programs they may be eligible to participate in. Registrants may make changes to this at any time by contacting the Registry Coordinator.
Information kept by the Registry will only be given to third party research groups following your written consent for the research study. In addition, any data presented by the Registry investigators will not reveal any individuals identity, as data is coded and de-identified. Privacy and confidentiality of your information is paramount.
Research Groups
The Registry cohorts will be available to Australian research groups when it is more established. If you would like to discuss prospective projects, please contact 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.
Current Research
The Registry is being established as part of Ms Jodie Ingles (Registry Coordinator) PhD project. This means all information collected by the Registry will be used in publications and a final PhD thesis.
Registry Publications/Presentations To Date
- Ingles J, McGaughran J, Vohra J, Weintraub RG, Davis A, Atherton J, Semsarian C. Establishment of an Australian National Genetic Heart Disease Registry. Heart, Lung and Circulation. Accepted for publication 7 May 2008.
- Ingles J, Yeates L, Connell V, McGaughran J, Davis A, Vohra J, Weintraub RG, Atherton J, Semsarian C. Genetic testing for inherited heart diseases: the National Genetic Heart Disease Registry. Oral Presentation, Human Genetic Society of Australasia 32nd Annual Scientific Meeting, Adelaide. 5 August 2008.