South Australia’s leading motor neurone disease (MND) charity has urged the state government to introduce mandatory reporting of new MND cases, following New South Wales’ recent designation of MND as a notifiable disease. Under the NSW system, diagnosing doctors and hospitals are required to report all new cases to public health authorities, enabling the creation of a centralized database to assist researchers in tracking the disease and identifying geographic clusters.

Samantha Mead, chief executive of Motor Neurone Disease South Australia (MNDSA), expressed support for the adoption of a similar approach in South Australia. She highlighted that compulsory notification would establish a more comprehensive and timely system for recording new diagnoses across both public and private healthcare settings. Mead noted that such a system could facilitate earlier connection to necessary support services and provide health authorities, researchers, and service providers with accurate data regarding the prevalence and incidence of MND within the state.

“For people living with MND, early identification could mean faster access to specialist care, clinical services, and the ability to plan for future health needs,” Mead said. She further emphasized that a notification system capturing all diagnoses—irrespective of whether care is received in public or private sectors—would provide a stronger foundation to improve outcomes for those affected by the progressive neurodegenerative disease.

Acting Health Minister Joe Szakacs indicated that the South Australian government is evaluating a potential registry similar to that implemented in New South Wales. He pointed to South Australia’s existing statewide electronic medical record system and cloud-based analytics platform as advantageous tools for establishing such a registry. Szakacs said Health Minister Blair Boyer has tasked the Commission on Excellence and Innovation in Healthcare with investigating the creation of a formal MND diagnosis registry as part of broader efforts to enhance clinical registries and improve healthcare delivery across the state.

While welcoming the government’s ongoing consideration, Mead cautioned that relying solely on public health data sources could risk excluding a significant number of individuals affected by MND. She explained that many patients receive portions of their diagnosis and treatment through private neurologists, private allied health providers, non-government organizations, or National Disability Insurance Scheme (NDIS) supports. Limited data collection confined to government healthcare systems could result in delayed identification or omission of these patients from registries, potentially impacting their access to timely care.

Mead stressed the importance of a notification system inclusive of both public and private healthcare sectors to ensure no one living with MND in South Australia is overlooked as the state explores improvements in disease surveillance and support services.