Research
Sudden Cardiac Arrest Registry
We aim to create registries in all states of Australia to identify all Australian sudden cardiac arrest cases in the young.
Having this information will ideally give us accurate data about how many young people have had a sudden cardiac arrest in Australia as well as improve care being provided to all families.
What is a registry?
A registry is an official, centralised database used to systematically record, track, and maintain specific information over time. The Sudden Cardiac Arrest Registry collects medical data to better understand the causes and impacts of cardiac events, helping answer critical questions and provide better care to families.
Eligibility
For this registry we are looking for people who have experienced an out-of-hospital sudden cardiac arrest (SCA) when they were <50 years old, and their family members.
We are looking for people who:
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Have survived an out-of-hospital sudden cardiac arrest aged <50 years
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Are the immediate family member of someone who has survived or died from an out-of-hospital sudden cardiac arrest aged <50 years
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Have died from an out-of-hospital sudden cardiac arrest aged <50 years, in which case consent can be provided on their behalf by their next of kin.
Participation in the study involves different things for different people, depending on how they have been impacted by sudden cardiac arrest.
For example; if you are a survivor of sudden cardiac arrest yourself, if you are a family member of someone who had a sudden cardiac arrest, or if you are completing the form on behalf of someone who passed away from sudden cardiac arrest.
Participation may incude:
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Completion of surveys
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Baseline call with a research genetic counsellor
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Permission to access medical records
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Providing a DNA sample
We will be able to advise what participation will involve for you after you have submitted an expression of interest.
