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Online assessment platforms can be useful way to collect research data in rare diseases like spinocerebellar ataxias, where geographical and physical barriers can impact access to traditional research settings. In this talk, we will discuss findings on cognitive, speech, and psychomotor performance from the “SCA-Remote” study, a two-year, international online assessment study assessing motor, speech, cognitive, and mood function in people with spinocerebellar ataxias 1, 2, 3, and 6. Furthermore, we will discuss the development and piloting of “MJDhub”, a new online clinical monitoring and education platform for Aboriginal and Torres Strait Islander Australians living with Machado-Joseph Disease (spinocerebellar ataxia type 3) in Australia’s Northern Territory. We will reflect on the costs and benefits of online assessment platforms and their potential role in ongoing spinocerebellar ataxia research and clinical practice.
Speaker bio: Dr Louisa Selvadurai is a Research Fellow at the School of Psychological
