Spinocerebellar ataxias remote assessment study
The SCA-Remote Study
A longitudinal, remote assessment of motor, speech, cognitive, and mood function in spinocerebellar ataxias
What is the study about?
This study aims to better understand how different symptoms in spinocerebellar ataxias (SCAs) change over time. SCAs are a group of inherited and progressive neurological diseases. Some questions we are asking about SCAs include:
- How do people’s symptoms change over the short-term (months) and longer-term (years)?
- Why do people’s symptoms sometimes go up and down?
- What non-motor symptoms do people with SCAs experience (e.g., mood changes, changes in thinking skills)?
We are trying to answer these questions by looking at how people with and without SCAs perform on simple online computer tasks - this allows people from anywhere in the world with a computer and internet connection to take part!
Answering these questions will be important for better management of symptoms and better measurement of symptoms in future clinical trials.
Spinocerebellar ataxias remote assessment study - YouTube video (3:52min)
- Who is running the study?
- Who can participate in the study?
- What does participation involve?
- How do I join the study?
- What has the research shown so far?
- Other updates from the team
- How do I find out more?
Who is running the study?
The study is being run by members of the Mechanisms of Neurodegeneration Lab (Harding group) at Monash University in Melbourne, Australia.
- Chief investigator: Dr Ian Harding
- Study lead: Dr Louisa Selvadurai
- Co-investigators: Associate Professor David Szmulewicz (Royal Eye and Ear Hospital), Professor Adam Vogel (The University of Melbourne), Dr Kishore Kumar (The University of Sydney)
- Research assistant: Ms Sarah Wallis
- Students from the School of Psychological Sciences, Monash University
Who can participate in the study?
We are currently looking for more people to take part, including:
- People who are diagnosed with SCA1, SCA2, SCA3, SCA6
- People who do not have a SCA (e.g., family and friends of people with SCAs, members of the general community)
You may be eligible to participate if you:
- Have a home computer (Mac or PC) with keyboard, mouse, microphone (in-built or external), and an internet connection
- Can speak and read English
- If you do have a SCA, you have received a positive gene test for SCA1, SCA2, SCA3, or SCA6
- If you do not have a SCA, you are aged over 30 and do not have a history of any neurological or psychological conditions
Participants from around the world are welcome to join!
What does participation involve?
This is a 2-year study. You will be asked to complete 30 minutes of online computer activities each month. You will receive an email telling you when it is time to complete the tasks and how to access them. You can complete the tasks at a time and place that is most convenient for you. The activities include:
- Tapping your keyboard
- Reacting to items on the computer screen
- Recording your speech
- Answering multiple-choice questions about your mood and experiences
We may also invite you to meet with our researchers for an online video call each year, to complete some additional assessments.
How do I join the study?
If you are interested in participating in this study, please follow the link below to read the Participant Explanatory Statement and fill in the Expression of Interest form.
Fill out the form even if you are unsure about your eligibility. One of our researchers will get in touch with you to discuss further.
What has the research shown so far?
This study has been running since May 2021. The data we have collected since then shows that:
- People with SCA had more ups and downs in their monthly computer task performance compared to the people without SCA.
- Some, but not all people with SCA report difficulties in psychological health as well as physical health.
- We are currently looking at other aspects of the data - watch this space!
Other updates from the team
- Members of our research team attended the inaugural International Congress for Ataxia Research in Dallas, Texas, USA (1st-4th November 2022). We met with ataxia researchers from all over the world, learned about recent advances in research, and presented our research on SCA-Remote and our other studies. See our 2022 December newsletter (2.7MB Pdf) for details on the congress, more about the SCA-Remote study, our team and related ataxia research initiatives and resources.
How do I find out more?
If you have any questions about this study, please contact the research team at: firstname.lastname@example.org or +61 492 923 663.
To learn more about the Harding group at Monash University, and other research we are conducting, please visit the Harding group webpage.
Australians with and without spinocerebellar ataxias - have you heard about the new Australian Cerebellar Ataxia Registry? Read more here.