By Melissa Blewitt

Motor neurone disease is occurring at more than four times the latest global estimated rate across Western NSW, according to new research from Charles Sturt University.
The population-based study identified 51 people living with or newly diagnosed with motor neurone disease across the Western NSW Local Health District between January 2023 and December 2025.
Researchers recorded an age-standardised incidence of 3.72 cases per 100,000 people each year, compared with the latest global estimate cited in the study.
The research also found significant variation across the region, with some areas recording substantially higher prevalence of the disease.
Oberon and Walgett recorded the highest prevalence estimates, while elevated prevalence was also identified in the Forbes, Cowra, Orange and Mid-Western local government areas.
The researchers said several areas with higher rates overlapped with regions of more intensive agricultural activity, raising questions about possible environmental and occupational influences.
However, the study does not establish that agricultural activity or any particular environmental exposure causes MND.
Lead researcher Dr Amanda Wright, from Charles Sturt University’s School of Rural Medicine and Macquarie University’s Motor Neuron Disease Research Centre, said the study was the first comprehensive population study to map MND across Western NSW.
“For the first time in Australia, we are mapping where people with MND live,” Dr Wright said.
“What we are seeing raises important questions for rural health, with unexpectedly high rates emerging across parts of regional NSW.”
The study also highlights the challenges faced by people with MND living outside major centres.
Patients travelled an average of 139 kilometres to access neurological care, while the average delay from the first symptoms to diagnosis was about nine months.
Almost half of the people included in the study — 47 per cent — had bulbar-onset MND, where symptoms initially affect speech or swallowing.
The proportion was higher among women, at 61 per cent.
Women accounted for 51 per cent of the study group and recorded higher incidence, prevalence and mortality rates than men, an unusual finding compared with the male predominance generally reported for MND.
Senior author Dr Lyndal Henden said the geographic mapping could identify communities carrying a greater disease burden but could not determine what was causing it.
“Better genetic testing, environmental and occupational exposure data and consistent case information across Australia will help us direct research to the right communities,” Dr Henden said.
The findings come as NSW introduces mandatory notification of MND.
From 1 September, doctors diagnosing MND in NSW have been required to notify NSW Health, making NSW the first Australian jurisdiction to introduce mandatory notification for the disease.
Researchers say the new reporting system will provide a more comprehensive picture of where MND occurs and help identify areas requiring further investigation and health services.
Professor Kelly Williams, Head of Research at Macquarie University’s Motor Neuron Disease Research Centre, said MND required a network of specialist and community services.
That network includes neurologists, GPs, allied health professionals, genetic counselling, respiratory support, intensive home care and palliative care.
“If the burden in regional Australia is higher than we have understood, that has real implications for governments in making sure those services are available,” Professor Williams said.
The study provides a baseline for Western NSW covering the three years before mandatory notification began.
Researchers said further investigation was needed into genetic, environmental and occupational factors that could contribute to the regional differences.
The study, titled Motor neuron disease in rural Australia: a population-based observational study of epidemiology, clinical characteristics and regional variation, was posted as a medRxiv preprint on September 10 and has been submitted to BMJ Open. It has not yet undergone peer review.
The research was presented at the National MND Conference 2026 in Adelaide.