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

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: eparatz@hotmail.com.
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

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

Elizabeth D Paratz et al. Heart Lung Circ. 2021 May.

. 2021 May;30(5):714-720.

doi: 10.1016/j.hlc.2020.09.937. Epub 2020 Nov 13.

Authors

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: eparatz@hotmail.com.
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.

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

Affiliations

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

Authors

Affiliations

Abstract

MeSH terms

LinkOut - more resources

Full Text Sources

Medical