Published in 2011, the MG Patient Survey research project conducted by Doctors at the RBWH in conjunction with the University of Queensland and in partnership with the MGAQ is ongoing. Internationally, it is a unique project in that patients are able to ‘tell their personal story’. It is available to all Australians.
Several papers have already been published and more are planned as future research interests develop. Professor Pamela McCombe (Neurologist) takes responsibility for ensuring that the data is fully recorded. Your words and comments are important. Topics for consideration include possible triggers, how does having the condition make you feel, what has it cost you financially, are other auto-immune conditions linked, what treatments have been prescribed etc.
If you have not had the opportunity to participate and would like to do so, please contact the MGAQ on 1800 802 568 or firstname.lastname@example.org. A full explanation of the process involved will be given and, as it is a hardcopy survey, it will be posted to you if you choose to participate. The return postage is covered via the envelope provided. The completed survey goes to the RBWH, remains confidential and data is de-identified for research purposes.
This project is a longitudinal study and remains important, particularly as each individual’s experience with the condition is unique. Reading through the questions, it becomes apparent how the focus of care has shifted and developed since 2011. It allows sufferers to reflect on how fortunate Australians with Myasthenia are in having such interested and dedicated Specialists available for their care. Please consider enquiring about this research project and show your support.
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.