Motor Neuron Disease Surveillance Unit in New South Wales

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.