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

Ball J, VACAR Annual Report 2018/2019, A. Victoria, Editor. 2019. Melbourne, Victoria. 2018 2019 Tseng, 2018, Prospective countywide surveillance and autopsy characterization of sudden cardiac death: POST SCD study, Circulation, 137, 2689, 10.1161/CIRCULATIONAHA.117.033427 Deasy, 2011, Out-of-hospital cardiac arrests in young adults in Melbourne, Australia-adding coronial data to a cardiac arrest registry, Resuscitation, 82, 1302, 10.1016/j.resuscitation.2011.05.031 McNeil, 2010, Clinical-quality registries: their role in quality improvement, Med J Aust, 192, 244, 10.5694/j.1326-5377.2010.tb03499.x Jakobsen, 2009, Data from a national lung cancer registry contributes to improve outcome and quality of surgery: Danish results, Eur J Cardiothorac Surg, 35, 348, 10.1016/j.ejcts.2008.09.026 Hoque, 2017, Impact of clinical registries on quality of patient care and clinical outcomes: a systematic review, PLoS One, 12, e0183667, 10.1371/journal.pone.0183667 Australian Commission on Safety and Quality in Healthcare, Economic Evaluation of Clinical Quality Registries: Final Report, ACSQHC, Editor. 2016. Sydney. Aouizerat, 2011, GWAS for discovery and replication of genetic loci associated with sudden cardiac arrest in patients with coronary artery disease, BMC Cardiovasc Disord, 11, 29, 10.1186/1471-2261-11-29 Nehme, 2015, Using a cardiac arrest registry to measure the quality of emergency medical service care: decade of findings from the Victorian Ambulance Cardiac Arrest Registry, Circ Cardiovasc Qual Outcomes, 8, 56, 10.1161/CIRCOUTCOMES.114.001185 Lijovic, 2017 Zentner, 2015, The cardiac genetics clinic: a model for multidisciplinary genomic medicine, Med J Aust, 203, 261.e1-6, 10.5694/mja14.01674 Anastasakis, 2018, Sudden unexplained death in the young: epidemiology, aetiology and value of the clinically guided genetic screening, Europace, 20, 472, 10.1093/europace/euw362 Ingles, 2016, Posttraumatic stress and prolonged grief after the sudden cardiac death of a young relative, JAMA Intern Med, 176, 402, 10.1001/jamainternmed.2015.7808 Mion, 2020, Care after resuscitation: implementation of the United Kingdom's first dedicated multidisciplinary follow-up program for survivors of out-of-hospital cardiac arrest, Ther Hypothermia Temp Manag, 10, 53, 10.1089/ther.2018.0048 Rosman, 2015, Cardiac anxiety after sudden cardiac arrest: severity, predictors and clinical implications, Int J Cardiol, 181, 73, 10.1016/j.ijcard.2014.11.115 Moulaert, 2009, Cognitive impairments in survivors of out-of-hospital cardiac arrest: a systematic review, Resuscitation, 80, 297, 10.1016/j.resuscitation.2008.10.034 Naber, 2018, Psychiatric sequelae of cardiac arrest, Dialogues Clin Neurosci, 20, 73, 10.31887/DCNS.2018.20.1/dnaber van Wijnen, 2017, The impact of cardiac arrest on the long-term wellbeing and caregiver burden of family caregivers: a prospective cohort study, Clin Rehabil, 31, 1267, 10.1177/0269215516686155 Viktorisson, 2019, One-year longitudinal study of psychological distress and self-assessed health in survivors of out-of-hospital cardiac arrest, BMJ Open, 9, e029756, 10.1136/bmjopen-2019-029756 Steinberg, 2016, Cardiac abnormalities in first-degree relatives of unexplained cardiac arrest victims: a report from the Cardiac Arrest Survivors with Preserved Ejection Fraction Registry, Circ Arrhythm Electrophysiol, 9, e004274, 10.1161/CIRCEP.115.004274 Quenin, 2017, Clinical yield of familial screening after sudden death in young subjects: the French experience, Circ Arrhythm Electrophysiol, 10, 10.1161/CIRCEP.117.005236 Sharifzadehgan, 2019 Ingles, 2007, Sudden cardiac death in the young: a clinical genetic approach, Intern Med J, 37, 32, 10.1111/j.1445-5994.2006.01241.x Semsarian, 2015, Sudden cardiac death in the young: the molecular autopsy and a practical approach to surviving relatives, Eur Heart J, 36, 1290, 10.1093/eurheartj/ehv063 Khera, 2018, Genome-wide polygenic scores for common diseases identify individuals with risk equivalent to monogenic mutations, Nat Genet, 50, 1219, 10.1038/s41588-018-0183-z Abraham, 2016, Genomic prediction of coronary heart disease, Eur Heart J, 37, 3267, 10.1093/eurheartj/ehw450 Bagnall, 2016, A prospective study of sudden cardiac death among children and young adults, N Engl J Med, 374, 2441, 10.1056/NEJMoa1510687 Ingles, 2013, The Australian genetic heart disease registry, Int J Cardiol, 168, e127, 10.1016/j.ijcard.2013.08.036