Monthly

Topic #1 July 2011

Ms Jodie Ingles and the National Genetic Heart Disease Registry

Some of you might have met me at the brilliant Hearts4Heart event in Melbourne not so long ago, I work with Prof Chris Semsarian and by background I am a genetic counsellor. I am about to complete a PhD thesis and plan to continue working in research to better understand the emotional aspects to being diagnosed with an inherited heart disease. I am the National Coordinator for the NGHD Registry, and I set this up as part of my PhD over the last 4 years. It is very exciting to say that we have now reached 800 individuals enrolled in the Registry, and these people are from families with inherited heart diseases. Inherited heart diseases encompass a range of conditions, our Registry focuses on those with inherited cardiomyopathies (like hypertrophic cardiomyopathy, familial dilated cardiomyopathy, arrhythmogenic right ventricular cardiomyopathy, left ventricular noncompaction) and inherited electrical disorders of the heart (such as long QT syndrome, catecholaminergic polymorphic ventricular tachycardia and Brugada syndrome). We are also developing more of a focus on individuals with bicuspid aortic valve disease and families where there is inherited mitral valve prolapse to better understand the genetics of these diseases. We have some information about these conditions at our website but stay tuned as we have a new website coming soon!! We encourage all families with these conditions to enrol in the NGHD Registry. The information we collect helps us to learn more about these diseases and the ultimate goal is to develop treatments and strategies to improve the management and care of our families. Having worked with families for the last 8 years, I can certainly see the need for a support service like Hearts4Heart and am extremely supportive and amazed at what Tanya and her team have been able to achieve in such a small amount of time. Well done! My contact information: Jodie Ingles, Molecuar Cardiology Research Program, Centenary Institute, Locked Bag No. 6 Newtown NSW 2042. P. 029565 6293 E. j.ingles@centenary.org.au W. www.registry.centenary.org.au T. @CSHeartResearch & FIND US ON FACEBOOK!