Join the Registry
We would like to enrol every family in Australia with an inherited heart disease in the Australian Genetic Heart Disease Registry.
By simply joining the Registry, you can help researchers shed new light on genetic heart disease in Australia to help improve diagnosis, prevention and treatment options.
What conditions are included?
While all types of heart disease are important, our Registry is specifically for genetic or inherited heart disease. This includes:
- Inherited cardiomyopathies, such as:
- Hypertrophic cardiomyopathy (HCM)
- Familial dilated cardiomyopathy (FDC)
- Arrhythmogenic right ventricular cardiomyopathy (ARVC)
- Familial restrictive cardiomyopathy
- Inherited electrical disorders, such as:
- Long QT syndrome (LQTS)
- Catecholaminergic polymorphic ventricular tachycardia (CPVT)
- Brugada syndrome
The Registry also includes a few other conditions but it must be a genetic or inherited heart disease. Please email the Registry Coordinator if you’d like to find out if you’re eligible for the Registry.
Who is eligible to enrol?
You are eligible to enrol if you are:
- Diagnosed with an inherited heart disease
- First-degree relative of someone with an inherited heart disease, this includes:
- Brothers and sisters
- Sons and daughters
How to enrol?
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*.
*All information collected by the Registry is held securely and according to strict human research ethics committee standards. No information is given out unless written consent from the individual is provided.
Email the Registry Coordinator to have an enrolment pack mailed to you.