Our patient reported outcome survey closes on 28 January 2022 so this is your last chance to make sure you complete it: https://redcap-bdsi.anu.edu.au/surveys/?s=PWPFW73R73
A huge thank you to everyone who has done your bit for the research by completing the survey already. We’ve had a fantastic response so far and need just a few more to reach our target number.
Our patient voice really does matter and this survey will help inform policy and health care, as well as provide information for patients like us when assessing choices and assist our physicians in treating us and understanding quality of life impacts.
This research project is about you, the patient, sharing your experiences with the condition and with any side effects or issues from the available range of Myasthenia Gravis treatments in Australia. The project, led by Professor Steve Vucic in collaboration with ANU Biological Data Science Institute, MAA and Terumo Blood and Cell Technologies, is collecting data on the impacts of Myasthenia Gravis on patients’ daily lives, including your work, family and social aspects, and your lifestyle.
If you started the survey, please remember to log back in to complete it and be sure to work your way to the end. If you need any assistance, you can email nidhi.menon@anu.edu.au or call 1800 802 568.
A reminder of some key tips to help complete the survey:
- Allow around 45 minutes in total. A ‘save and return’ option is available if you need to take a brief pause.
- Make a list of ALL treatments/medications prescribed and consider any short or long term side effects experienced as a result of these.
- 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.
Thank you again to everyone for supporting this project and contributing to this valuable research for our patient community in Australia.