The “Myasthenia Gravis Patient Reported Outcomes Survey” Research Project is now ready for patient input! Please take the time to tell of your experiences with the available range of Myasthenia Gravis treatments and also indicate if there are any resultant issues which have required additional medical attention.
This significant, highly professional and exclusively Australian research project aims to give:
- insight into what treatments are being made available across Australia for Myasthenia Gravis patients; together with
- the impacts of and the patient tolerance for these treatments.
The data will be analysed promptly with the results providing invaluable information to patients when assessing choices, to clinicians when making recommendations, and to government departments when prioritising access to treatment options.
This project is a collaboration between Neurologist Professor Steve Vucic, an internationally recognised and award winning researcher, ANU Biological Data Science Institute, MAA and Terumo Blood and Cell Technologies as an industry partner.
This digital survey can be found here.
To make it as easy as possible for every person to complete the survey it is suggested that you prepare by doing the following:
- Allow around 45 minutes in total. A ‘save and return’ option is available for those who need to pause.
- Ask for support if you do not usually access technology. Call 1800 802 568 to discuss or email info@mgaq.org.au. Consider seeking support from family and friends.
- Making a list of ALL treatments/medications ever prescribed.
- Considering any short or long term side effects experienced as a result of the medications.
- Have your diary/calendar at hand to reflect on your past twelve months. You will be asked to report on your current MG experience and also any additional services utilised in this period.
- Refer to the ‘Participant Information Sheet’ to understand more.
The minimum participation target for this project is 350 respondents. This will give impressive and guiding information from our cohort. Please don’t think that others can make this happen. We need support from everyone with an MG experience. For over 18 months, the MAA volunteer board, have been dedicated and committed to bringing this important opportunity to our members. Please reward these workers with your time and knowledge.
Thank you for your support,
Susan White (MAA Chair)