NSW mandates MND reporting to study disease causes and hotspots
Consensus Summary
NSW has become the first Australian jurisdiction to make motor neurone disease (MND) a notifiable condition, requiring mandatory reporting of cases from Tuesday. This move aims to improve understanding of the disease, which has seen deaths treble since the 1980s according to 7NEWS, and cases increase by 300 per cent over the past 37 years according to ABC. Researchers are focusing on regional hotspots, where mortality rates are significantly higher than in major cities, with some areas like the Riverina experiencing rates five to seven times the national average. The data collected will help investigate potential environmental factors, including links to blue-green algae blooms in waterways like Lake Wyangan, which has been studied for close to four decades. Both sources agree that MND remains incurable, with no clear genetic cause in most cases, and emphasize the need for further research to identify occupational, recreational, or environmental triggers.
✓ Verified by 2+ sources
Key details reported by multiple sources:
- NSW will report MND cases starting from Tuesday, with data collection including 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
- MND mortality rates in Tasmania were 1.4 times higher than in NSW during 2019-2023, and 1.2 times higher in South Australia than in NSW during the same period
- MND cases in regional areas are significantly higher compared to major cities
- MND is a rare, progressive neurological disorder affecting approximately eight in every 100,000 Australians, with 90% of cases occurring without any apparent reason or family link
- MND hotspots in regional NSW include Griffith, Leeton, Wagga Wagga, Narrandera, Tamworth, Coffs Harbour, and Port Macquarie
Points of Difference
Details reported by only one source:
- The number of deaths due to MND has trebled since the 1980s according to a study
- As many as 750 people were living with MND in NSW, with at least 300 people expected to be diagnosed this year
- The Macquarie University study in March this year found regional hotspots with higher mortality rates from MND
- Acting Premier Prue Car stated the change will help build better understanding of MND to work toward treatment options and a potential cure on Monday
- MND NSW chief executive Liam O’Meara said identifying who has MND is the first step to understanding the cause of sporadic MND
- MND cases have increased by 300 per cent across Australia in the past 37 years, with rural areas hit the hardest
- People living in rural and regional Australia are 40 per cent more likely to die from MND
- MND hotspots in the Riverina have rates estimated to be five to seven times the national average
- Professor Dominic Rowe established Macquarie University's MND Research Centre in 2013
- Tania Magochi was diagnosed with MND in 2011 and grew up near Lake Wyangan, which is prone to blue-green algae blooms
- Philip Orr has studied Lake Wyangan's water quality for close to four decades
- Lake Wyangan had a blue-green algae bloom captured in 2020
- Griffith City Council has tried methods like chemical trials, water isolation, and recirculating water to control algae in Lake Wyangan
Where the reporting differs
Details that conflict, or appear in only some outlets:
- 7NEWS states MND deaths have trebled since the 1980s, while ABC states MND cases have increased by 300 per cent in the past 37 years
- 7NEWS mentions a 1.4 times and 1.2 times increase in MND mortality in Tasmania and South Australia respectively during 2019-2023, while ABC does not provide specific mortality rate comparisons for those years
- 7NEWS states 750 people are living with MND in NSW, while ABC does not provide a specific number of current MND cases in NSW
- 7NEWS references a study from March this year, while ABC references a 2013 study and a 2020 algae bloom observation
Source Articles
NSW takes big step toward finding a cure for motor neurone disease in an Australian-first
MND is a progressive neurological disorder that causes rapid degeneration of muscle activity and for which there is no cure
New hope in quest to solve mystery of MND hotspots
It is hoped new data from mandatory reporting of motor neurone disease (MND) cases will help researchers understand why there are hotspots in NSW, and what causes the disease.
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