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NSW Classifies Motor Neurone Disease as Notifiable and Will Create State Registry

The change requires legal reporting of MND diagnoses to build location and occupation data that researchers can use to look for environmental or workplace links.

Peter Riley and his wife Beth in 2022. File picture by Sylvia Liber
Member for Murray Helen Dalton and Australia's foremost MND specialist Professor Dominic Rowe AM from Macquarie University at the announcement on Wednesday, June 24. Picture supplied
Neurologist Dominic Rowe wears a blue lab coat and looks at fish in water at a laboratory
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Overview

  • NSW has reclassified motor neurone disease as a notifiable condition, Health Minister Ryan Park announced on Wednesday, and will establish a dedicated state registry for reported cases.
  • Under the new rule doctors, hospitals and laboratories must legally report MND diagnoses to state health authorities, and officials say clinical guidance will be issued in the coming weeks.
  • The registry will record where people live and their occupations so researchers can map clusters and seek environmental or occupational causes that voluntary national data have not captured.
  • Clinicians say the change could improve case counting and research; a leading neurologist estimated MND will cause about 250 deaths in NSW this year, and roughly 90% of cases are classed as sporadic.
  • The move follows long‑running local campaigning and prior action on hotspots, including a $2 million Griffith cluster probe in 2023 and high‑profile advocacy and fundraising by figures such as Neale Daniher.