Ethics Statement

At the Cerebellar Ataxia Registry (CARe), we are committed to respecting the rights and dignity of individuals with cerebellar ataxia and their families.

Our Commitments:

• We collect and use personal and health information responsibly and transparently.

• We protect confidentiality and ensure data security.

• We obtain informed consent and respect individual autonomy.

• We promote fairness, equity, and non-discrimination.

Your Participation:

• Voluntary participation and withdrawal at any time.

• No impact on routine care or relationships with healthcare professionals.

Data Protection:

• Secure storage and limited access to identifiable information.

• De-identified data sharing with approved research studies (optional).

Transparency and Accountability:

• Regular updates and notifications.

• Compliance with Australian privacy laws and ethics guidelines.