SEEKING PEOPLE WITH MYASTHENIA GRAVIS FOR RESEARCH
Over the coming months the MGAQ and the MAA will be emailing its members with requests to complete a number of surveys. These surveys form part of some new and important research currently taking place for persons living with MG and will cover a range of health topics.
This research is essential to the future shaping of health services; ensuring quality care and improving treatment, management and better disease understanding for persons living with MG.
The MGAQ is excited about this investment of MG research here in Queensland and more broadly across Australia. We therefore encourage all of our members to ‘have your say’ and support this research by sharing your knowledge, experiences and needs in the completion of these surveys. Not only will this help to ensure the best possible outcomes from this work for people living with MG but it will encourage further projects to be developed. Rare Disease is all about small numbers. Without sufficient numbers, research is not effective. This means that everyone in the MG community needs to participate!
The current offerings are survey based data collections and unfortunately these rely heavily on modern technology. Providing alternative data collection methods has been discussed but it is often not possible to change the mode. For many in our group this will mean trying much harder and working together. If possible, family and friends may be willing to assist with the technology. Local libraries can be very good at helping and by contacting the MGAQ we may be able to help too! We must try hard.
Below is the current project exploring how Allied Health is utilised for our people. Delightfully, there is often a very real personal engagement from the researchers and a genuine desire to help us and to work with our community. This is very much the case with this project. Three researchers are involved. The first is Katrina Williams, one of only 8 Specialist Neurological Physiotherapists in Australia. Katrina is interested in Myasthenia Gravis research as she has seen that there is little research in this area. She believes it is important for people with MG to understand their conditions and see what could be done with movement and exercise to improve their daily lives. She has seen great improvements in MG people, and wants to better understand how exercise and allied health can better support patients. Working alongside Katrina is Dr Kirstine Shrubsole, a speech pathologist with a specific clinical and research focus on stroke care and communication disorders. Kirstine has MG and takes an active role on the MGAQ committee. Supporting these ladies is Chloe, a final year speech pathology student. Chloe chose this research project to challenge herself and because a friend has MG. As she learns more about the condition, she is excited to be involved and by the prospect of helping people with Myasthenia.
Now is the time for action as this current project will close on 7 August, 2020.
Who: Australian adults with a diagnosis of Myasthenia Gravis.
What: Complete an online survey (45-60 mins).
Why: To investigate knowledge and awareness of symptoms, and perspective on whether allied health services would assist in managing symptoms.
This research will help us develop educational and advocacy materials for people with Myasthenia Gravis to receive allied health services.
How: Use this link https://tinyurl.com/MGAlliedHealth
For further information: Ms Katrina Williams on 0407 550 930 or firstname.lastname@example.org
This research is supported by the Myasthenia Gravis Association of Queensland Inc.