Journal article
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
Heart Lung and Circulation | ELSEVIER SCIENCE INC | Published : 2021
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.
Grants
Awarded by NHMRC/NHFA Early Career Fellowship
Funding Acknowledgements
No relevant conflicts of interest identified. The work of the EndUCD Registry is supported by funds from the Ross Dennerstein FoundationTM. EDP is supported by an NHMRC/NHF co-funded Postgraduate Scholarship, RACP JJ Billings Scholarship and PSA Cardiovascular Scholarship. CS is supported by an NHMRC Australia Practitioner Fellowship. JB is supported by a co-funded NHMRC/NHFA Early Career Fellowship (APP1112829). ALG is supported by an NHF Future Leadership Fellowship. DS is supported by an NHF Future Leadership Fellowship.