A Pilot MND Surveillance Unit in New South Wales

MND kills 1 in 200 Australians each year. Some MND (10%) is due to genetic causes. The vast majority of MND (>90%) is sporadic. There are many theories about the cause(s) of sporadic MND, none of which are proven.In the last 36 years, MND has increased as a cause of death in Australia from 238 deaths in 1986, (0.21% of all deaths in Australia, or 1 in 500) to 803 deaths in 2022 (0.5% of all deaths in Australia, or 1 in 200). This is an increase of 2% per year. This can only be environmental.There is no systematic approach to identifying who has MND in New South Wales. The voluntary MiNDAUS Registry has currently captured a total of 570 MND patients (or <20% of Australian MND patients). The goal of this research is to establish a surveillance unit for MND in New South Wales.Aims1.To perform systematic geolocation at time of diagnosis of >1050 consecutive patients with MND from metropolitan, regional, rural and remote NSW.2.To assay the putative environmental factors in the >500 MND patients in the Macquarie University Neurodegenerative Biobank utilising appropriate controls3.To establish a pilot surveillance unit at Macqaurie initially focussed on the Riverina, but expanding to the rest of NSW to understand the epidemiology of MND