The New South Wales Sudden Cardiac Arrest Registry: A Data Linkage Cohort Study

Heart Lung Circ. 2023 Sep;32(9):1069-1075. doi: 10.1016/j.hlc.2023.06.573. Epub 2023 Jul 5.


Background: Sudden cardiac arrest (SCA) in young people aged 1 to 50 years often occurs with no presenting symptoms or risk factors prompting screening for cardiovascular disease prior to their cardiac arrest. Approximately 3,000 young Australians suffer from sudden cardiac death (SCD) each year, making this a major public health issue. However, there is significant variation in the way incidence is estimated resulting in discrepancy across reporting which impacts our ability to understand and prevent these devastating events. We describe the New South Wales (NSW) Sudden Cardiac Arrest Registry: a retrospective, data linkage study which will identify all SCAs in the young in NSW from 2009 through to June 2022.

Objective: To determine the incidence, demographic characteristics and causes of SCA in young people. We will develop an NSW-based registry that will contribute to a greater understanding of SCA including risk factors and outcomes.

Methods: The cohort will include all people who experience a SCA in the NSW community aged between 1 to 50 years. Cases will be identified using the following three datasets: the Out of Hospital Cardiac Arrest Register housed at NSW Ambulance, the NSW Emergency Department Data Collection, and the National Coronial Information System. Data from eight datasets will be collected, anonymised and linked for the entire cohort. Analysis will be undertaken and reported using descriptive statistics.

Conclusions: The NSW SCA registry will be an important resource for the improved understanding of SCA and inform the widespread impacts it has on individuals, their families and society.

Keywords: Incidence; New South Wales; Registry; Sudden cardiac arrest; Sudden cardiac death.

MeSH terms

  • Adolescent
  • Adult
  • Australia
  • Child
  • Child, Preschool
  • Cohort Studies
  • Death, Sudden, Cardiac* / epidemiology
  • Death, Sudden, Cardiac* / etiology
  • Humans
  • Infant
  • Information Storage and Retrieval
  • Middle Aged
  • New South Wales / epidemiology
  • Out-of-Hospital Cardiac Arrest* / epidemiology
  • Out-of-Hospital Cardiac Arrest* / etiology
  • Registries
  • Retrospective Studies
  • Young Adult