Cerebellar Ataxia Research Database

Ataxia database Banner

What is the Cerebellar Ataxia Research Database?

The research database is a contact list of individuals with cerebellar ataxia, or healthy individuals willing to serve as comparison subjects, who are willing to be contacted for participation when new studies are initiated.

The Cerebellar Ataxia Research Database is also linked to the national Australian Cerebellar Ataxia Registry. Individuals with ataxia can choose to enrol in both databases.

Find out more:

How do I sign up?

  • People with 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

If you have any questions, please contact the research team at: harding.lab@monash.edu or 0492 923 663.

Why have an ‘Ataxia Database’?

Identifying eligible and willing participants, particularly for studies in rare diseases, is a barrier to timely conduct of research studies. Having a more central database greatly improves recruitment, with positive downstream effects on funding usage, data quality, and research output. The database will allow us to efficiently invite eligible people to participate in research studies and clinical trials.

Who is eligible to sign up?

You may be eligible if you are either:

  • An individual with a non-acquired cerebellar ataxia, or at risk of developing a non-acquired cerebellar ataxia.
  • Healthy people are also needed to serve as comparison subjects.

How will my information be used?

When new studies are launched, we 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 can be as simple as filling out a questionnaire to participating in brain scans and more in-depth behavioural tasks.

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!

What might participation in a research study involve?

  • Cognitive testing - pen and paper/iPad tasks
  • Motor testing - Balance/movement
  • Brain scanning - Magnetic Resonance Imaging (MRI)
  • Online surveys - Questionnaires about daily function, emotion, behaviour

What are the expected time commitments of studies?

Typical time commitments range from:

  • a few minutes at home
  • a full day of testing at Monash University, sometime with repeat visits.

We do not typically undertake clinical trials of medications (although we can inform you of clinical trials that we are aware of which may be relevant to you).

If you have any questions please contact the research team at: harding.lab@monash.edu or 0492 923 663.