Australia to launch first guidelines in motor neurone disease

A two-year project to develop the nation’s first clinical guidelines for motor neurone disease (MND) has been launched by University of Adelaide researchers.

The initiative, spearheaded by Professor Zachary Munn, Director of the Health Evidence, Synthesis, Recommendations and Impact (HESRI) Unit, marks a critical step toward creating a nationally consistent, evidence-based approach to MND care.

The absence of a cure for MND means that best-practice care is essential for enhancing the quality of life and managing symptoms for those affected. The Australian MND Guidelines will establish standardised recommendations for healthcare professionals, individuals living with MND, their carers, and policymakers.

“For the first time, Australia will have a nationally developed, evidence-based guideline for MND care. This initiative is critical to ensuring that all Australians living with MND receive the highest standard of care, no matter where they live,” said Professor Munn.

MND, a life-limiting disease, affects approximately 2,000 Australians, with two new diagnoses and two deaths every day. Teva’s Radicava (edaravone) was recently listed on the Pharmaceutical Benefits Scheme (PBS) for amyotrophic lateral sclerosis (ALS), a subtype of MND, marking progress in treatment access.

Phil Camden, who was diagnosed with MND in 2013, knows first-hand the profound impact of the disease.

“They say people live on average for 27 months after diagnosis… I am hopeful the guidelines will never allow people to do without the care they need ever again,” Camden shared.

According to Dr Bec Sheean, Director of Cure Research and Programs at FightMND, the guidelines promise to be a game-changer for the MND community.

“In the fight against the beast that is MND, it is crucial that we don’t focus solely on investment into research for a cure. We also work to fund initiatives that provide support to Australians living with MND today,” Dr Sheean said.

“Currently, Australia lacks nationally consistent guidelines for the care of those living with MND. As a result, the standards of care differ greatly from state to state and between metropolitan and rural communities. This disparity creates significant inequalities in the quality of care provided, leaving patients and their families struggling to navigate a fragmented system.”

The Guideline Development Panel will be co-chaired by Professor Steve Vucic, Northcott Chair of Neurology and Director of the Brain and Nerve Research Centre at Concord Clinical School, University of Sydney, and Jo Whitehouse, General Manager of Support Services at MND Victoria.

“I’ve had a long-standing interest in MND as a clinician and researcher for more than 20 years, and am a big advocate for a more standardised model of care,” Professor Vucic stated. “To date, research has focused on the basic science behind MND, which is incredibly valuable, but this guideline will bring MND care up into the 21st century.”

Locally, the phase 3 ATLAS Preventative Trial is recruiting in NSW to evaluate the efficacy and optimal timing of initiating treatment with Biogen’s tofersen in people who have SOD1 gene mutation and pre-symptomatic carriers of MND. 

Highlighted the pressing need for the guidelines, Whitehouse, who has been working with people with MND for seven years, said “I’ve been aware of the discrepancy in relation to clinical care provision across regions and states, for example some people across the country have access to non-invasive ventilation, some don’t even though it has been proven to extend life.”

She continued, “The guideline is super important as they will enable health professionals to consider and implement the best available evidence about care management for people living with MND. They will also help hugely with advocacy – to have best practice recommendations about MND care will enable us to approach health providers/funders to improve consistency of care across the country.”

The project has been funded and supported by FightMND, the charity founded by 2025 Australian of the Year Neale Daniher AO after his own diagnosis in 2013, Patrick Cunningham, whose wife was also diagnosed with MND in 2013, and the late Dr Ian Davis OAM, who was diagnosed with MND at the age of 33.

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