Motor Neuron Disease Surveillance Unit in New South Wales
A prospective observational surveillance study to monitor motor neuron disease in New South Wales
Macquarie University
24 participants
Dec 10, 2025
Observational
Conditions
Summary
This is an observational study to identify MND incidents over a 3-year period in NSW. A telehealth consultation between the participant, their GP and a neurologist is set up for the neurologist to identify patients with MND. MND cases captured will be used to calculate the incidence and prevalence of MND in NSW.
Eligibility
Inclusion Criteria2
- Patients must be residents in NSW
- Patients identified by their primary healthcare professional with MND red flags
Exclusion Criteria1
- Nil
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Interventions
This study is an observational study with no treatment intervention. Recruitment over a 3 -year period starting from July 2025 to July 2027. Invitation to participate is through the participants' general practitioner (GP). A 30-45 min telehealth appointment between the participant, their GP and a neurologist will be set up as a one-off consultation. Participants will be asked to describe any MND symptoms, family history of MND or dementia and treatments received for these symptoms. This 3-way telehealth appointment (participant, GP, neurologist) can be arranged by the GP via a website and secure online portal (REDCap). Participants identified to probably have MND by the neurologist at the telehealth consultation will be invited to attend the MND clinic for further physical examination and tests together with routine care for MND patients. This is an epidemiology study to identify MND incident cases, therefore assessments and tests are not included in the design of the study.
Locations(1)
View Full Details on ANZCTR
For the most up-to-date information, visit the official listing.
ACTRN12625000427471