Forty cases of motor neurone disease have been reported to NSW Health since the state became the first in Australia to make the condition notifiable.
NSW clinicians have reported 40 cases of motor neurone disease under new mandatory notification requirements introduced in September, marking an Australian first in efforts to improve surveillance of the neurological condition.
The notifications, recorded in the state’s Notifiable Conditions Information Management System (NCIMS) and accessed on 27 October, include four retrospective cases involving patients diagnosed before the reporting requirements came into effect.
NSW became the first Australian jurisdiction to make MND a notifiable condition on 1 September 2026, following the introduction of the Public Health Amendment (Motor Neurone Disease) Order 2026.
Under the changes, medical practitioners must notify NSW Health of MND cases, providing authorities with data to better understand the disease and inform future healthcare planning and research priorities.
Clinicians can also voluntarily report historical cases, with no restrictions on how far back diagnoses can be recorded.
Although retrospective notification is not mandatory, patients and their families can request that their treating clinician report a previous diagnosis.
NSW Health said the initiative would help establish a clearer picture of MND across the state, potentially informing healthcare service delivery, research funding and investigations into the disease’s causes and treatment options.
MND affects approximately eight in every 100,000 Australians, with around 90% of cases occurring sporadically, without an apparent cause or family history.
The progressive neurological disease causes degeneration of motor neurones, resulting in worsening muscle weakness and loss of function. Patients can experience increasing difficulty walking, speaking, swallowing, and breathing. There is currently no cure.
NSW health minister Ryan Park said the first notifications represented an important milestone in efforts to improve understanding of the disease.
“Behind each one of these 40 cases is a person who has had their lives turned upside down by this beast of a disease. We owe it to them and their families to do what we can to help,” he said.
“NSW is leading the nation in making MND a notifiable disease. I am proud we were able to make this important change.”
Mr Park said allowing retrospective notifications would give patients diagnosed before September an opportunity to contribute to the state’s surveillance data.
“By allowing clinicians to notify cases retrospectively, we are giving patients and families who received their diagnosis before the change an option to be counted and hopefully provide a more complete picture of MND in NSW,” he said.
“When it comes to motor neurone disease, there is so much we don’t know. We hope that by collecting more data, we can begin to understand it better.”
The notification system collects demographic and clinical information, including patients’ names, addresses, dates of birth, Aboriginality, country of birth, occupation, symptom onset, and notification dates, as well as dates of death where applicable.
Details of the notifying clinician are also recorded, with NSW Health stating that all information collected is kept confidential.
The 40 notifications represent cases reported since the new requirements commenced, rather than a measure of the total number of people living with MND in NSW.
Last month The Medical Republic revealed MND was striking people in western NSW at unusually high rates.
The new Australian research found incidence was more than four times the latest global estimate, with pockets of prevalence reaching almost seven times the expected rate.
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The first comprehensive population-based study of MND across the Western NSW Local Health District identified 51 people living with or newly diagnosed with the fatal neurodegenerative disease between 2023 and 2025.
Researchers found an age-standardised incidence of 3.72 cases per 100,000 person-years, compared with a global estimate of 0.77 per 100,000. Age-standardised prevalence was 7.50 per 100,000 and mortality 3.40 per 100,000 person-years.
The study found striking geographical variation. Oberon recorded the highest prevalence, at 23.90 cases per 100,000 people, followed by Walgett at 19.04, while elevated prevalence was also seen in Forbes, Cowra, Orange, and Mid-Western LGAs.
No cases were recorded during the study period in several neighbouring LGAs, including Bogan, Cobar, and Weddin.
The researchers were surprised to see that women made up 51% of the cohort and had higher incidence, prevalence, and mortality estimates than men, although the differences were not statistically significant. That contrasted with the usual male predominance reported in MND.
The study itself stressed that no causal inference could be drawn from the overlap with agricultural land use. Individual genetic, occupational, and environmental exposure data were unavailable, while small numbers meant estimates for individual LGAs carried considerable uncertainty.
MND has become one of the highest profile diseases in Australia at the moment due to high profile professional football players who have died from MND or are currently living with the disease.
These include former AFL player and coach Neale Daniher, who cofounded FightMND and was named Australian of the Year, and who died in May this year; and South Sydney NRL star Jai Arrow, who announced the same month that he was retiring from football due to his MND diagnosis.
