The Australian MG community has done a great job progressing the latest research project! There have been 264 respondents to the Patient Reported Side Effects Outcomes Survey as of December 6th! Of these, 34 have not fully completed the survey and it is hoped that they will return to the survey to complete their data entry. (Help is available if required.)
Thank you to everyone who has taken the time to complete the survey. The project is on track to reach target numbers!
At the recent Project Team Meeting, a sneak preview of the data from a selection of questions showed that the grouped responses are very consistent with the member information which feeds through to the MAA. This indicates that a wide range of people have responded and that the data is very credible. This sneak preview showed significant use of treatments and also some surprising treatment trends which Dr. Vucic will be keen to discuss in his report. This preview was very much a teaser but the team is keenly engaged and has begun planning key foci for the analysis.
The survey cut off date is now set and locked in for January 28th, 2022. With all that has been happening in the Nation, this will allow people to take a breath over the Christmas period, to find some time to reflect on their MG life and to undertake the survey allowing around 45 minutes.
Feedback has indicated that there are quite a number of people who are yet to complete the survey. If these people come on board we can exceed the target. This would be fabulous and would result in the best performance outcome for the Australian MG Community.
There will be no further extensions as the researchers are keen to begin the analysis and reporting. January 28th will be the final date! Please do not miss your opportunity! https://redcap-
Once again, thank you to everyone for supporting the MAA in 2021 and, in particular, via this project.
Susan White
MAA Chairperson.