The End Unexplained Cardiac Death (EndUCD) Registry for Young Australian Sudden Cardiac Arrest

Elizabeth D Paratz; Luke Rowsell; Alexander van Heusden; Dominica Zentner; Sarah Parsons; Natalie Morgan; Tina Thompson; Paul James; Andreas Pflaumer; Christopher Semsarian; Jodie Ingles; Rosalind Case; Jocasta Ball; Karen Smith; Dion Stub; Andre La Gerche; Australian EndUCD Registry

doi:10.1016/j.hlc.2020.09.937

The End Unexplained Cardiac Death (EndUCD) Registry for Young Australian Sudden Cardiac Arrest

Heart Lung Circ. 2021 May;30(5):714-720. doi: 10.1016/j.hlc.2020.09.937. Epub 2020 Nov 13.

Authors

Elizabeth D Paratz¹, Luke Rowsell², Alexander van Heusden², Dominica Zentner³, Sarah Parsons⁴, Natalie Morgan⁵, Tina Thompson⁶, Paul James⁶, Andreas Pflaumer⁷, Christopher Semsarian⁸, Jodie Ingles⁹, Rosalind Case¹⁰, Jocasta Ball¹¹, Karen Smith¹², Dion Stub¹³, Andre La Gerche¹⁴; Australian EndUCD Registry

Affiliations

¹ Baker Heart and Diabetes Institute, Melbourne, Vic, Australia; Alfred Hospital, Melbourne, Vic, Australia; St Vincent's Hospital Melbourne, Melbourne, Vic, Australia. Electronic address: [email protected].
² Baker Heart and Diabetes Institute, Melbourne, Vic, Australia.
³ Royal Melbourne Hospital, Melbourne, Vic, Australia; Royal Melbourne Hospital Clinical School, Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne, Melbourne, Vic, Australia.
⁴ Victorian Institute of Forensic Medicine, Melbourne, Vic, Australia; Department of Forensic Medicine, Monash University, Melbourne, Vic, Australia.
⁵ Victorian Institute of Forensic Medicine, Melbourne, Vic, Australia.
⁶ Royal Melbourne Hospital, Melbourne, Vic, Australia.
⁷ Royal Children's Hospital, Melbourne, Vic, Australia; Department of Paediatrics, Melbourne University, Melbourne, Vic, Australia; Murdoch Children's Research Institute, Royal Children's Hospital, Melbourne, Vic, Australia.
⁸ Agnes Ginges Centre for Molecular Cardiology at Centenary Institute, The University of Sydney, Sydney, NSW, Australia.
⁹ Cardio Genomics Program at Centenary Institute, The University of Sydney, Sydney, NSW, Australia; Department of Cardiology, Royal Prince Alfred Hospital, Sydney, NSW, Australia; Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia.
¹⁰ Baker Heart and Diabetes Institute, Melbourne, Vic, Australia; Alfred Hospital, Melbourne, Vic, Australia; Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, Vic, Australia; Ambulance Victoria, Melbourne, Vic, Australia; Florey Institute of Neuroscience and Mental Health, Melbourne, Vic, Australia.
¹¹ Baker Heart and Diabetes Institute, Melbourne, Vic, Australia; Ambulance Victoria, Melbourne, Vic, Australia; Department of Community Emergency Health and Paramedic Practice, Monash University, Melbourne, Vic, Australia.
¹² Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, Vic, Australia; Ambulance Victoria, Melbourne, Vic, Australia; Department of Community Emergency Health and Paramedic Practice, Monash University, Melbourne, Vic, Australia.
¹³ Baker Heart and Diabetes Institute, Melbourne, Vic, Australia; Alfred Hospital, Melbourne, Vic, Australia; Ambulance Victoria, Melbourne, Vic, Australia; Florey Institute of Neuroscience and Mental Health, Melbourne, Vic, Australia.
¹⁴ Baker Heart and Diabetes Institute, Melbourne, Vic, Australia; Alfred Hospital, Melbourne, Vic, Australia; St Vincent's Hospital Melbourne, Melbourne, Vic, Australia.

PMID: 33199184
DOI: 10.1016/j.hlc.2020.09.937

Abstract

In 2019, the first multi-source registry of sudden cardiac arrest and death for patients aged 1-50 years launched in Victoria, Australia. Sudden cardiac arrest (SCA) affects approximately fifteen hundred younger Victorians per year. The End Unexplained Cardiac Death (EndUCD) Registry enrols SCA/death (D) cases aged 1-50 years, providing family screening, access to psychological support through clinical sites and creating a genetic biorepository for whole-genome sequencing. The registry will support clear pathways of cardiac assessment, epidemiological profiling and routine family screening and psychological support.

Keywords: Cardiac arrest; Cardiomyopathy; Clinical registry; Sudden cardiac death.

MeSH terms

Death, Sudden, Cardiac* / epidemiology
Death, Sudden, Cardiac* / etiology
Heart Arrest*
Humans
Registries
Victoria