Australian Cerebellar Ataxia Registry
What is the Australian Cerebellar Ataxia Registry?
The registry is a contact list of individuals with cerebellar ataxia who are willing to be contacted for participation in research studies and clinical trials.
When signing up, you will fill out some brief online forms that ask about your ataxia diagnosis, current symptoms, and contact details for you and your doctors.
Researchers from around Australia may then invite you to participate in research. You can accept or decline any offer.
Only a small number of new studies are launched each year, and have strict eligibility criteria. You may not receive any research invitations, but your enrolment is still critical to guide research planning and funding allocation!
Please read the Explanatory Statement and see below for further information and to sign-up.
Find out more:
How do I sign up?
- People with a genetic or idiopathic ataxia
- Sign-up will take about 10 minutes. OPTIONAL: if you have a genetic ataxia, and you have a copy of your genetic testing report, please have this available for upload
- People without ataxia
- Friends and family who do not have ataxia can also sign-up, as many of our research studies also require a “healthy comparison” group.
If you have any questions, please contact the research team at: firstname.lastname@example.org or 0492 923 663.
Who is eligible to sign up?
- People with genetic ataxias (e.g., spinocerebellar ataxia, RFC1-CANVAS), including people who have tested positive for the gene but are not yet experiencing symptoms.
- People idiopathic ataxias (e.g., multiple system atrophy, idiopathic late-onset cerebellar ataxia)
- Healthy people are also needed to serve as comparison subjects.
- People with acquired ataxia (e.g., stroke or brain injury), or ataxia resulting from another neurological condition (e.g., multiple sclerosis) are not eligible. If unsure, please contact us.
How will my information be used?
When new studies are launched, researchers will contact eligible people from the database and provide more information about the study. You can freely choose to participate or not to participate in any study you are invited into.
Studies may range from filling out questionnaires, to undertaking neurological tests and brain scans, to participating in new medication or treatment clinical trials.
Please be aware that research studies and clinical trials have strict enrolment criteria, and only a small number of studies are launched each year. As such, you may be invited participate in many studies, or none at all. But having you in the database is still important so we know that you are out there when we plan our studies!
If you have any questions please contact the research team at: email@example.com or 0492 923 663.