The Australian MND Guideline
The Australian Motor Neurone Disease (MND) Guideline seeks to address key gaps in MND care and support national standards for best practice, integrating the latest research, lived experiences and multidisciplinary expertise.
Evaluation Survey of Motor Neurone Disease (MND) Care Practices in Australia
The Health Evidence Synthesis, Recommendations and Impact (HESRI), Adelaide University is conducting a national survey exploring knowledge, attitudes and behaviour of healthcare professionals providing Motor Neurone Disease care practices in Australia.
Are you a healthcare professional providing care to people living with MND in Australia?
We are inviting healthcare professionals in Australia who currently provide, or have recently provided, care for people living with MND to take part in a research study.
This study aims to assess the knowledge, attitudes, and behaviour of healthcare professionals involved in MND care in Australia prior to the implementation of Australia’s first MND Care Guideline. It will also identify the barriers and facilitators that influence current MND care practices.
How can I participate?
Participation involves completing an anonymous online survey. The survey will take approximately 10-15 minutes to complete. Participation is voluntary, and you may withdraw at any time before submitting your responses.
Why does your participation matter?
Your input will help the development of targeted implementation strategies for the Australian MND Care Guideline as well as provide a reference point to inform future evaluation activites.
Please complete the survey by 31 October 2026 before it closes.
What happens next?
The survey findings will be analysed and used to inform the strategies to implement Australia’s first MND Care Guidelines. The results may also be published in peer-reviewed journal articles and presented at conferences and stakeholder meetings.
This study has been approved by Iris Ethics Human Research Ethics Committee. The HREC Approval Number is AU5819.
For questions or concerns, contact:
zachary.munn@adelaide.edu.au
sophiya.dulal@adelaide.edu.au
Public Consultation has now CLOSED on the first batch of recommendations for the Draft Australian Motor Neuron Disease (MND) Care Guideline
Thank you to everyone who provided feedback.
The Australian Motor Neurone Disease (MND) Guideline Development Panel and Health Evidence Synthesis, Recommendations and Impact (HESRI), Adelaide University, are inviting people living with MND, families and carers, health professionals, researchers, service providers, and community organisations to review and comment on the first version of draft recommendations from the Australian MND Care Guideline.
What is the Australian Motor Neurone Disease (MND) Care Guideline?
Funded by FightMND, the Australian MND Care Guideline provides practical, evidence-based recommendations to support MND care across all stages and settings. Recommendations are directed to the relevant health professionals involved in MND care, as well as to people living with MND and their families and carers where shared decision-making, symptom management, assistive strategies, or advance care planning are central. They also apply to support organisations and advocacy bodies that provide information and services to people affected by MND.
The draft guideline has been developed using the GRADE (Grading of Recommendations, Assessment, Development and Evaluation) approach and aligns with standards set by the National Health and Medical Research Council (NHMRC) and the Guidelines International Network (GIN).
Draft recommendations will be released in batches with the first batch of draft recommendations relating to:
Medications to modify disease
Diagnosis
Why your views matter
Your feedback is a vital part of the guideline development process. It helps ensure the final recommendations are evidence‑based, practical, and genuinely reflect the needs and experiences of the MND community.
Our Purpose
The Australian MND Guideline aims to create evidence-based guidelines to improve the care and quality of life for people living with Motor Neurone Disease (MND).
This ground-breaking initiative will provide healthcare professionals, caregivers, and policymakers with actionable recommendations to enhance MND management across Australia.
Our Team
This project is led by Health Evidence Synthesis, Recommendations, and Impact (HESRI) at Adelaide University, a global leader in evidence-based guideline development. Our team consists of experts in guideline methodology, evidence synthesis, health economics, biostatistics, lived experience research and engagement, ensuring a robust and inclusive approach to this important work.
Key features of our approach include:
- Community-led and driven by individuals living with MND, caregivers, and healthcare professionals.
- Rigorous methods using GRADE (Grading of Recommendations Assessment, Development, and Evaluation) and following the Australian National Health and Medical Research Council (NHMRC) guidelines for guidelines.
- Commitment to inclusivity, transparency, and making an impact on outcomes for those living with MND.
Our partner: FightMND
FightMND is Australia’s leading organisation dedicated to finding effective treatments and a cure for Motor Neurone Disease. Through funding research, raising awareness, and advocating for people living with MND, FightMND is a vital partner in this project and the funder for this work.
Why their work matters:
- Every day, two Australians are diagnosed with MND, and two lose their lives to this devastating disease.
- FightMND invests in cutting-edge research and supports initiatives that improve care and quality of life for those affected by MND.
Stay Updated
Sign up to receive updates on the Australian MND Guideline:
- Be the first to know about new developments, opportunities to contribute, and the release of the final guidelines.
- Join a community dedicated to improving the lives of Australians living with MND.
Contact our Project Team
Australian MND Guideline Project Key Information
- The guidelines will incorporate the voices of people with lived experience of MND and reflect the diversity of Australia's population.
- This project is a collaboration between researchers, clinicians, and advocates, ensuring a comprehensive and impactful guideline.
- We are committed to transparency and collaboration, with opportunities for public and professional input throughout the project.
Stay tuned for updates, opportunities to get involved, and the release of resources that will inform healthcare providers and improve outcomes for people living with MND.