Australian Genetic Heart Disease Registry

Information

The aims of the Australian Genetic Heart Disease 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.

 

For information about what conditions are included and who is eligible to enrol, please see www.heartregistry.org.au

Registry LocationAustralia
Registry ParticipationVoluntary
Registry Contact

Registry National Coordinator – Dr Jodie Ingles

E: registry@centenary.org.au

Adding New Patients to Registry

Individuals

To participate in the Australian Genetic Heart Disease Registry, you will need to fill in a simple information sheet and sign a consent form, which gives the Registry researchers access to your medical records. Email the Registry Coordinator to have an enrolment pack mailed to you.

Health Professionals

If you would like to enrol a patient, please contact the Registry Coordinator for the Online Registration link or to arrange enrolment packs to be mailed to you.

Registry enrolment requires informed and voluntary consent by the individual, and Registry consent forms for children and adults are provided. Upon receiving signed consent, we contact the treating cardiologist for clinical information relating to this patient.

Please see the website for more information

heartregistry.org.au

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