The first cases of motor neurone disease (MND) since NSW became the first jurisdiction in Australia to make it a notifiable condition have been reported.
As at 27 October, 40 notifications have been received from clinicians across the state and entered into the Notifiable Conditions Information Management System (NCIMS).
“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,” said Health Minister, Ryan Park.
“NSW is leading the nation in making MND a notifiable disease. I am proud we were able to make this important change.”
To help develop a clearer understanding of MND in NSW, clinicians are also able to notify historical cases of the disease. Of the 40 MND notifications received so far, four have been retrospective.
Retrospective notification of MND cases is not mandatory, however patients and their families can ask their managing clinician to notify their case. There are no restrictions on which historical MND cases can be notified.
“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,” said Minister Park.
“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.”
From 1 September, medical practitioners have been required to notify NSW Health of MND cases, following the publication of the Public Health Amendment (Motor Neurone Disease) Order 2026.
This Australian-first initiative will provide NSW Health with surveillance data and may assist with the future planning of healthcare services and funding for research into its potential causes, and possible future treatment options.
MND affects approximately eight in every 100,000 Australians, and 90% of cases occur sporadically, without any apparent reason or family link.
It is a progressive neurological disorder that causes rapid degeneration of muscle activity and can impair walking, talking, breathing and general functioning. Sadly, there is currently no cure for the disease.
A notifiable disease is a medical condition that by law must be reported to NSW Health by medical practitioners, hospitals, laboratories, and schools or childcare facilities, to help prevent and control the spread of certain diseases.
Data collected includes the case’s full name, address, date of birth, age, gender, Aboriginality, language spoken at home, country of birth, occupation/school, date of onset, date of notification, and date of death if applicable. It also includes details about the referring doctor. The data collected is kept confidential.
