Characterising and Tracking of Patients with Inherited Neurodegenerative Disorders (INDD)

Neurodegenerative disorders cause a collapse of the structure and function of neural networks. In this study sensory, motor, autonomic and cognitive functions are observed. The non-invasive neurological (gait and balance assessments), cognitive (tests for processing speed, attention and working memory), swallowing (a clinical assessment of dysphagia) vestibular (assessment of inner ear balance by observing eye movements) and Nerve Excitability Study (tests conductivity and electrical activity of the nerves) will be administered by suitably trained members of the research team. Observation occurs at Baseline, 3 months, 6 months and 12 months in Year 1, then yearly onwards until the participant has impaired capacity to personally provided informed consent at interim study visits or withdraws from study. Neurological, cognitive, swallowing and vestibular assessments and a nerve excitability study will take approximately 4 hours (with breaks) on site at St Vincent's Hospital at baseline and yearly afterwards." and "Questionnaires, psychomotor and speech assessments using web based tools will take approximately 45 mins at participants home