Health authorities in the state of New South Wales in Australia have classified motor neurone disease (MND) as a “notifiable condition”, meaning doctors will be required to report diagnoses, as well as where patients live and their occupations, reports ABC News.
The information will be collated in a new state registry that will help to further research into the incurable neurological condition, they said, and give researchers and clinicians a clearer picture about where cases are being identified, and whether there were environmental factors, or other factors that play a role.
The decision was welcomed by Michelle Vearing, who lives in Griffith, a city in the state’s south-west that has been identified as a hotspot for the disease – where the incidence of MND is five times the national average.
Three generations of her family have been affected by MND, and she said the classification was recognition of its immense impact.
“Making it notifiable allows governments, authorities, doctors and nurses to be aware of how significant this disease is in the community, compared with a lot of other illnesses,” she added.
Neurologist Dominic Rowe, who heads up the Motor Neurone Disease Centre at Macquarie University, said MND would kill around 250 people this year in New South Wales alone.
“Some motor neurone disease is genetic, but 90% is sporadic, and it’s our contention that it is an environmental and occupational disease,” he said.
“Up until now there’s been no systematic acquisition of who has the disease, where they live, and what’s caused it.
“If we don’t understand what causes it, we can’t develop mechanistic therapies that slow it and stop it.”
Campaigners have praised the prolonged advocacy of politician Helen Dalton, from the Murray area, who used her maiden speech to parliament in 2019 to voice concerns regarding potential links between blue-green algae and the incidence of MND in her electorate.
In 2023, the state government committed $2m to investigate an MND cluster in Griffith.
ABC News article – New registry established as MND becomes 'notifiable disease' in NSW (Open access)
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