Establishment of an Australian National Genetic Heart Disease Registry

Heart, Lung & Circulation
J InglesChristopher Semsarian

Abstract

A National Genetic Heart Disease Registry has recently been established, with the aim to enroll every family in Australia with a genetically determined cardiomyopathy or primary arrhythmic disorder. The Registry seeks to further our understanding of the impact and burden of disease in this population; increase awareness and provide education to health professionals and families; and establish a large cardiac genetic cohort as a resource for approved research studies. The Registry is currently recruiting families with inherited cardiomyopathies (e.g. hypertrophic cardiomyopathy) and primary arrhythmogenic disorders (e.g. long QT syndrome), with scope to expand this in the future. Affected individuals, as well as their first-degree (at-risk) family members are eligible to enroll. Participants are currently being recruited from cardiac genetics clinics in approved recruitment sites and hope to expand to other Australian centres including general cardiology practice in the future. A significant focus of the Registry is to improve understanding and create awareness of inherited heart diseases, which includes ensuring families are aware of genetic testing options and current clinical screening recommendations for at-risk family membe...Continue Reading

References

Nov 18, 2000·Circulation·D M Milewicz, C E Seidman
Apr 28, 2004·The American Journal of Cardiology·Irandi JayatillekeChristopher Semsarian
Nov 18, 2005·American Heart Journal·Franco CecchiSimona Giampaoli
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Citations

May 5, 2012·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Jodie InglesChristopher Semsarian
Apr 20, 2013·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Jodie InglesChristopher Semsarian
Jun 12, 2013·International Journal of Evidence-based Healthcare·Emma HammondHugh J S Dawkins
May 29, 2012·Heart, Lung & Circulation·Gerald F WattsUNKNOWN Familial Hypercholesterolaemia Australasia Network
Sep 16, 2011·Atherosclerosis. Supplements·Gerald F WattsUNKNOWN Familial Hypercholesterolaemia Australasia Network Consensus Group (Australian Atherosclerosis Society)
Jul 20, 2011·Heart Rhythm : the Official Journal of the Heart Rhythm Society·Jodie InglesChristopher Semsarian
Sep 21, 2011·International Journal of Cardiology·Jodie InglesChristopher Semsarian
Nov 7, 2015·American Journal of Medical Genetics. Part a·Charlotte BurnsJodie Ingles

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