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MG Survey Updates

Posted on Thursday, 22 May 2014

Research established by the Association in conjunction with Doctors from the RBWH and the University of Queensland has been ongoing since 2011. This research has taken the form of a patient survey sent to sufferers for completion at their own discretion. Supporting Doctors need only complete a one page validation form. There is opportunity to add personal comment and tell a story which may have been spread over decades. Doctors will be looking at a wide range of information for things such as triggers to the condition, the range of treatments being used, financial and emotional costs to the community, the significance of associated conditions and much more.

Good support from Australian Myasthenics has resulted in significant data being collected and analysed with at least two medical papers now in the process of publication. Further research is expected to lead from this growing data collection.

Therefore, it remains imperative that more Australian sufferers of this rare condition become aware of the survey and be encouraged to participate.

All data is directed to the University of Qld and RBWH where it is stored, collated and analysed under strict ethical protocols. De-identified data will be made available for the purposes of additional research. Newly diagnosed sufferers whose journey is just beginning are invaluable to the survey to highlight any changing approaches to medical treatment and to highlight environmental or other factors which may be relevant to the incidence of the condition. All stories are important.

To request a copy of the survey or to find out more about it please use the Contact Us section of the website or the Freecall number 1800802 568.