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NSW Sudden Cardiac Arrest Registry

Aiming to better understand the causes of sudden cardiac arrest in young people.

The NSW Sudden Cardiac Arrest Registry is a research study that aims to better understand the causes of sudden cardiac arrest in young people, the risk factors that might predict who is most at risk, and to improve the outcomes of patients and their families after a sudden cardiac arrest.

Sudden cardiac arrest occurs when a person develops a dangerous heart rhythm that prevents the heart from effectively pumping blood through your body. While some people survive a sudden cardiac arrest, the condition can lead to sudden cardiac death. There are often no warning signs before a sudden cardiac arrest.

Through this study, led by Associate Professor Jodie Ingles, Head of the Clinical Genomics Laboratory at Garvan Institute, we aim to help healthcare professionals provide the best possible care to individuals who have had or are at risk of sudden cardiac arrest and improve the support available for affected families.

We are recruiting any individuals who have experienced a sudden cardiac arrest between the ages of 1 and 50 years in NSW, and their family members.

What does participation involve?

  • Informed consent that will give us access to your medical record
  • Health surveys that take approximately 15 minutes each
  • For the individual who had the sudden cardiac arrest, a blood sample for DNA analysis

If you don’t live in NSW but otherwise meet the eligibility criteria, please contact us to discuss options for participation ( If you live in Victoria, we invite you to consider joining the EndUCD project registry managed by the Baker Institute. These registries are operating closely to understand sudden cardiac arrest nationally.

This study has been approved by Sydney Local Health District Human Research Ethics Committee X22-0409 (RPAH zon