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;
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/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.
Journal HEART, LUNG & CIRCULATION
ISSN 1444-2892
Published 13 Nov 2020
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Pages
DOI 10.1016/j.hlc.2020.09.937
Type Journal Article
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