Myasthenia Alliance Australia is pleased to support and highlight relevant research and peer reviewed publications that have undertaken cutting-edge research and development related to myasthenia gravis (MG) and our mission.
One of the key objectives of MAA is to support, contribute to, promote and foster research and data collection. Our current, upcoming and past research projects are listed below. The success of these research projects relies on the contributions of Australians living with myasthenia gravis. Your support is essential and greatly valued.
You can keep up to date by subscribing to MAA News at:
https://myastheniaalliance.org.au/subscribe
You can also monitor:
https://www.australianclinicaltrials.gov.au
for clinical trials being conducted in Australia.
This page will be updated regularly as relevant publications, research programs and clinical trials become available.
Current and Upcoming Research
VALUE-Ig Study
(Monash University Centre for Health Economics – Medical Research Future Fund Grant)
Information will be gathered from MGBase, patient surveys, and records from hospitals and government sources.
A sub-study is a Discrete Choice Experiment (DCE) designed to explore treatment preferences of Australians living with MG.
Aim: To generate evidence to inform the optimal use of immunoglobulin (Ig) across four patient cohorts, including people living with MG.
Status: Focus groups to inform the Discrete Choice Experiment sub-study commenced in June 2024.
Contact: value.mg@monash.edu
Treatment Preferences of Patients with MG
(University of Toronto / Toronto General Hospital, Canada)
A global patient survey examining treatment preferences using the Discrete Choice Experiment (DCE) methodology.
Status: Participant recruitment commenced in late July 2024.
SPIN (Systematic Profiling in Neurological Conditions) Project: Lived Experience Qualitative Research
(Edith Cowan University)
Qualitative research where participants provide comments and feedback through Miro, an online collaboration platform.
Status: Participant recruitment anticipated from late September 2024 (to be confirmed).
Patient Insights and Lived Experience Project
(Alexion)
Market research designed to gain a deeper understanding of the lived experience of Australians with generalised myasthenia gravis (gMG).
Aim: To guide the development of person-centred educational resources for healthcare professionals and the MG patient and caregiver community.
Status: Phase 1 (interviews) completed in October 2023. Phase 2 (survey) expected in October 2024 (to be confirmed).
Past Research
MG Patient Perspective on Treatment Supports and Digital Health (Lived Experience of gMG)
(UCB)
Market research designed to collect feedback from people living with MG and caregivers regarding educational and support needs, including the use of digital tools to manage symptoms.
Results: Phase 1 survey completed in September 2023. Phase 2 interviews completed in February 2024.
MG Patient Reported Outcomes Survey in Australia
(TerumoBCT, Australian National University and University of Sydney)
A national survey of Australians living with MG examining quality of life, personal experiences, financial impacts and clinical aspects of living with MG.
Aim: To collect data on the social and economic impacts of MG, particularly patient experiences with treatments and treatment side effects.
Results: Published in 2023 in the Journal of Clinical Neuroscience.
Allied Health Research Project – Can We Improve Referrals to Allied Health?
(University of Queensland, Mater Health and MGAQ)
A pilot study conducted in 2022 involving surveys, use of the MG SyTReT tool and semi-structured interviews.
Aim: To gather patient perspectives on the feasibility, acceptability and usefulness of the Myasthenia Gravis Symptom Tracking and Referral Tool (MG SyTReT).
Allied Health Research Project – Barriers and Benefits
What are the barriers to, and benefits of, accessing allied health services?
(University of Queensland and MGAQ)
Study conducted in 2021 using semi-structured interviews with adults living with MG.
Aim: To explore patient experiences, perceived benefits and barriers associated with accessing allied health services.
Results: Published in 2022 in Disability & Rehabilitation.
Impact of the COVID-19 Pandemic on Australians Living with Myasthenia Gravis
(Alfred Health/Hospital)
National survey conducted in 2022.
Aim: To understand the impact of the pandemic on the wellbeing of Australians living with MG, including treatment decisions, vaccination timing, access to care, quality of life and mental health.
Status: Completed in 2022.
Allied Health Research Project – Perceived Needs and Benefits
Do people with MG want or need allied health services?
(University of Queensland and MGAQ)
National survey conducted between 2020 and 2021 exploring MG symptoms and access to allied health care.
Aim: To investigate symptoms, impairments, community participation, quality of life and utilisation of allied health services among Australians living with MG.
Results: Multiple peer-reviewed journal articles published.
MG Patient Survey in Australia
(Royal Brisbane and Women’s Hospital, University of Queensland and MGAQ)
Conducted in 2011 as a national patient survey.
Aim: To assess the impact of MG on quality of life, depression, psychosocial wellbeing and financial outcomes for Australians living with MG.
Results: Published in 2015 in the Journal of Clinical Neuroscience.
Research Publications
Clinical Features, Treatments, Their Impact, and Quality of Life for Myasthenia Gravis
This publication appeared in the Journal of Clinical Neuroscience (Volume 118, 2023, Pages 16–22).
The study provides an updated understanding of the experiences of Australians living with MG. Participants completed an online survey covering demographics, clinical features, treatment side effects and quality of life measures.
Key findings included:
- Female and seronegative patients reported greater symptom burden.
- Earlier disease onset and longer delays to diagnosis were identified in some patient groups.
- Treatment side effects were common and included fatigue, weight gain, reduced ability to fight infection, gastrointestinal symptoms and muscle weakness.
- Patients who had undergone thymectomy generally reported improved quality of life.
The study identified opportunities to improve treatment practices and highlighted areas requiring further research.
Exploring Impairments and Allied Health Professional Utilisation in People with Myasthenia Gravis
This study was published in the Journal of Clinical Neuroscience (2023, Volume 114, Pages 9–16).
The research explored how people with myasthenia gravis experience impairments in vision, dizziness, hearing and fatigue, and how these symptoms affect balance confidence, community participation and health-related quality of life.
The study also investigated the utilisation of allied health professionals and perceptions of their role in managing these impairments.
The findings showed that:
- Visual and hearing impairments, along with fatigue, were associated with reduced quality of life and community participation.
- Visual impairment and dizziness were associated with reduced balance confidence.
- Perceptions and utilisation of allied health professionals varied considerably among participants.
Common barriers to accessing allied health services included:
- Limited clinician knowledge of myasthenia gravis.
- Previous negative experiences with healthcare professionals.
- Uncertainty about the role allied health professionals can play in managing MG.
- Lack of awareness that certain symptoms may be associated with myasthenia gravis.
This research highlights the importance of improving awareness of allied health services and ensuring people living with MG can access multidisciplinary care when required.
The journal article can be accessed here:
https://www.sciencedirect.com/science/article/pii/S0967586823001248
Myasthenia Gravis (MG) Australian Survey 2022
This Australian survey was conducted in 2022 with the aim of gathering evidence to support advocacy efforts for people living with myasthenia gravis and to promote timely and equitable access to appropriate healthcare and funding.
The survey explored a range of topics, including:
- Quality of life
- Financial impacts of living with MG
- Access to clinical services
- Treatment experiences
- Healthcare support needs
The information collected provides valuable insights into the challenges faced by Australians living with MG and helps inform future advocacy, education and support initiatives.
The survey results can be accessed by clicking HERE.
MAA gratefully acknowledges the significant contribution of Terumo Blood and Cell Technologies to this project.