Whilst published in 2011 the survey remains an important and relevant asset for myasthenics. Even today, in 2017, we need more Australian sufferers of this rare condition to become aware of the survey and to be encouraged to participate.
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 and effectiveness of treatments being used, financial and emotional costs to the community, the significance of associated conditions and much more.
One published paper has already resulted and a second analysis of the data is expected soon. New technology developed by the University of Queensland enables the written answers to be correlated and analysed also.
All the 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 as we know that the condition presents so differently for each individual. If you experience concerns in completing some questions, help is only a phone call away. There will be some questions which are not pertinent to you and that is fine too.
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 1800 802 568.