Centenary Institute Launches a World First

On 24 August 2009, The Centenary Institute in Sydney officially launched the World’s First National Genetic Heart Disease Registry.  With the Registry, researchers are hoping to shed new light on genetic heart disease and to provide families the answers they need to understand and initiate measures to prevent sudden cardiac death.

Fact sheet - Genetic Heart Disease
Fact sheet - National Genetic Heart Disease Registry
Media release

To find out more about Centenary's research click here

background

The National Genetic Heart Disease Registry was established with the aim to enrol every family in Australia with an inherited heart disease. This includes:

• The inherited cardiomyopathies (such as hypertrophic cardiomyopathy, familial dilated cardiomyopathy, arrhythmogenic right ventricular cardiomyopathy and familial restrictive cardiomyopathy), and
• The inherited electrical disorders (including long QT syndrome, catecholaminergic polymorphic ventricular tachycardia and Brugada Syndrome).

Specifically, the aims of the Registry are:

1. 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.
2. To create awareness and provide a reliable source of information to families and health professionals.
3. To 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.

who is eligible to enrol

Family members who are eligible to enrol include:

1. Any individual with a diagnosis of an inherited heart disease.
2. First-degree (i.e. at-risk relatives including parents, brothers/sisters, children of person with the disease).

how to enrol

Participation in the Registry requires the individual to sign a consent form, which gives the Registry investigators access to their medical record. 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.

Contact for more information on enrolment, or to request an enrolment pack for your family.