591 The Australian Genetic Heart Disease Registry: 13 Years on

The Australian Genetic Heart Disease (AGHD) Registry was established in 2007 with the goal to recruit every Australian family with a genetic heart disease. It has become an invaluable resource for patient education, research studies and raising awareness of genetic heart diseases. The AGHD Registry is supported by 7 specialised clinics across Australia. Patients and at-risk relatives are recruited from clinics or self-referral. Written informed consent is required. Clinical and genetic information are collected and entered in to a central registry database. Families with inherited cardiomyopathies (e.g. hypertrophic cardiomyopathy [HCM], familial dilated cardiomyopathy [DCM], arrhythmogenic right ventricular cardiomyopathy [ARVC], isolated left ventricular noncompaction [LVNC]), or primary arrhythmogenic disorders (e.g. long QT syndrome [LQTS], catecholaminergic polymorphic VT [CPVT], Brugada syndrome [BrS]) and familial valve diseases are eligible. A website and Facebook page have been created. To date, 2407 individuals from 1432 families have enrolled. Of these, 1241 (52%) are male and 1724 (72%) have a clinical diagnosis of disease while 683 (28%) are at-risk relatives. Those with HCM contribute the biggest subgroup, 969 (40%), with other diseases comprising smaller sub-groups [DCM, 144 (6%); ARVC, 65 (3%); LVNC, 72 (3%), LQTS, 276 (12%), CPVT, 53 (2%), and BrS, 88 (4%)]. More than ten collaborative studies have been published using the Registry cohorts to date. The AGHD Registry is a unique resource understanding genetic heart diseases in Australia. It provides accurate information for families, health professionals and researchers, and has contributed to building an evidence-base to improve management of families with genetic heart diseases.