The Centenary Institute
The National Genetic Heart Disease Registry.
The Centenary Institute is an independent leader in medical research seeking improved treatments and cures for cancer, cardiovascular and infectious diseases. They work to discover new prevention, early diagnosis and treatment options to enable each generation to live a longer, healthier life than the one before.
The Agnes Ginges Centre for Molecular Cardiology lead by Professor Christopher Semsarian, is focused on the translation of basic laboratory research to improvements in the diagnosis and treatment of patients with heart disease.
The FMStudio was approached to help set up the National Genetic Heart Disease Registry, using FileMaker Pro as the development platform of choice, for their database. In collaboration with Jodie Ingles a PHd student at the time, the system was developed to capture a wealth of information regarding genetic heart disease.
The registry, hopes to enrol every family in Australia who have an inherited heart problem, in an effort to learn more about these diseases in Australia (e.g. how many people get symptoms, how many people have defibrillators, how often people see their cardiologist etc).
The registry will also be used as a way to send information out to interested members about any new treatments/ information that may become available. All information gathered is kept strictly confidential.