Calling for participants in Myasthenia Gravis survey
Researchers from the University of Queensland, working in collaboration with the Myasthenia Gravis Assoc. of Qld. Inc, are conducting a survey of people living with MG.
The results will be used to promote greater awareness of the condition as a health issue, data collected will be used to determine the future direction of research into MG and associated health issues and the results will also be presented to government agencies with the aim of sharpening the government’s focus on disability related socio-economic issues. As worldwide research into MG is limited, the findings of this survey are expected to stimulate further research and interest.
Although initiated in Queensland, the survey will be available Australia wide the with hope of having as many Australians living with MG complete the survey as possible, and offers people with MG the rare opportunity to fully explain their medical journey and how their condition has impacted on their lives. The findings will be made available on the MGAQ’s website and in their newsletters.
Participants of the study will be asked questions regarding their illness, the medical therapy of it and the impact it has had on work, family and lifestyle. An additional medical questionnaire will also require endorsement from each participant’s specialist and an extended timeline has been factored into receiving survey results so as to enable participants to wait until their next routine specialist appointment to have the endorsement completed. MGAQ will also be providing telephone support to answer any queries raised when completing the survey, in addition to all required documentation and reply paid postage to return the completed forms.
The information collected will be treated with the strictest confidentially, only available to the three main researchers involved; Prof. McCombe, Dr. Gillis and Dr. Blum, before it is encoded for data entry and further analysis by other researchers involved in the project.
If you have MG and are interested in participating in this confidential study, please contact MGAQ on freecall 1800 802 568 or visit the Myasthenia Gravis Association of Qld Inc website.