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/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.
Journal | HEART, LUNG & CIRCULATION |
ISSN | 1444-2892 |
Published | 01 May 2021 |
Volume | 30 |
Issue | 5 |
Pages | 714-720 |
DOI | 10.1016/j.hlc.2020.09.937 |
Type | Journal Article |
Sponsorship |