RecruitingACTRN12625000427471

Motor Neuron Disease Surveillance Unit in New South Wales

A prospective observational surveillance study to monitor motor neuron disease in New South Wales

Sponsor

Macquarie University

Enrollment

24 participants

Start Date

Dec 10, 2025

Study Type

Observational

Conditions

Amyotrophic Lateral Sclerosis Motor Neuron Disease

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

Sex: Both males and femalesMin Age: 18 Yearss

Plain Language Summary

Simplified for easier understanding

Motor Neurone Disease (MND) is a progressive neurological condition that affects the nerves controlling movement, gradually taking away a person's ability to walk, talk, swallow, and breathe. Understanding how many people are developing MND in New South Wales — and how many are living with it at any given time — is important for planning health services and allocating research funding, but this data is currently incomplete. This observational study is setting up a surveillance system to track new MND cases across NSW over three years. When a GP identifies warning signs of MND in a patient, a telehealth consultation will be arranged with a neurologist who can help confirm or investigate the diagnosis. The data collected will be used to calculate how often MND occurs and how many people are affected at any given time in NSW. You may be eligible if you are an adult living in NSW whose GP has identified potential signs of MND. There are no formal exclusion criteria — the study is designed to be as inclusive as possible to ensure all new cases are captured. Participation involves taking part in a telehealth consultation alongside your GP.

This summary was AI-generated to explain the trial in plain language. It is not medical advice. Always discuss eligibility with your doctor before enrolling in a clinical trial.

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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' gen

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.