The causes of MND have eluded researchers for decades, but a world-first tracking registry aims to change that.
A dedicated NSW motor neurone disease (MND) registry is set to be established following health minister Ryan Park’s announcement that the disease would become a notifiable condition, enabling systematic tracking of diagnoses, locations and occupations for the first time.
Clinicians, hospitals, and laboratories will be required to formally report all diagnoses to NSW Health.
MND, also known as Amyotrophic Lateral Sclerosis (ALS), is a rare, incurable and fatal condition characterised by rapid deterioration in physical function.
Associate Professor Marco Morsch, director of the Macquarie MND research centre, said biological research and comprehensive data are key to understanding MND’s causes, patterns and progression – gaps the registry aims to address across NSW.
“Notifications won’t cure MND itself … [but] making it notifiable turns diagnoses into a structured public-health dataset, allowing us to examine geographic patterns, environmental exposures, diagnostic delays and service gaps with far greater precision,” he said.
While several gene mutations are linked to MND and are inherited in 5-10% of cases, the remaining 90-95% are sporadic.
Experts believe these sporadic cases result from a complex combination of genetic, environmental and lifestyle factors.
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Macquarie University neurology researcher Professor Dominic Rowe AM, said the decision marked a major and landmark step forward in the “global fight” against MND.
“To the best of my knowledge, no jurisdiction anywhere in the world has established a legislative notification and surveillance framework for MND of this kind,” he said.
“Despite decades of research, we still know remarkably little about why most people develop MND.
“New South Wales now has the opportunity to lead the world in the way MND is monitored, researched and understood,” he said.
“This disease will kill 800 Australians this year,” Professor Rowe said in March.
New epidemiological analysis by Macquarie University found MND deaths have tripled since the late 1980s, with higher mortality rates in regional areas.
Early MND symptoms include muscle weakness, fatigue, twitching, nighttime cramps, loss of fine motor skills, and changes in speech and swallowing, which can often resemble other muscle or neurological disorders.
Approximately 85% of patients with MND die from respiratory failure.
Voluntary assisted dying is permitted for patients with neurodegenerative diseases in the final 12 months of their life.
The federal government also announced this week that older people with MND warranted urgent priority for the Support at Home program.
