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The End Unexplained Cardiac Death (EndUCD) Registry for Young Australian Sudden Cardiac Arrest
Elizabeth D Paratz1, Luke Rowsell2, Alexander van Heusden2
1Baker Heart and Diabetes Institute, Melbourne, Vic, Australia; Alfred Hospital, Melbourne, Vic, Australia; St Vincent's Hospital Melbourne, Melbourne, Vic, Australia.
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.
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