Privacy Policy


ARRK is committed to providing quality services to you and this policy outlines our ongoing obligations to you in respect of how we manage your Personal Information.


Data Protection and Security

The ARRK website and database will be housed on a secure database system, the Rare Disease Registry Framework (RDRF), Centre for Comparative Genomics, Murdoch University, WA.

Data will be encrypted for transfer and security of the data and will use the current protection standards used by the Department of Health (DOH), NSW. The data will be link-anonymised.

All records from this study will be kept for a minimum of 7 years post study closure.


Access to the website

There will be different access to the website according to the user type;

Public access will include the information pages for patients/families and general front pages but no clinical information on the participants.

For patients recruited to the registry, they will be able to access their own clinical information with a personalised login, which requires two identifiers. They will not be able to change their information, although they will be able to highlight any potential errors. In the future, they will also be data entry pages for patients, to include quality of life and health outcomes but not clinical data.

For health professionals they will again require personalised login with two identifiers which will enable them to see only the patients in their unit as directed according to the local lead.

The registry working-group will have administration rights allowing them to see total patients recruited and access the admin site.

Disease Specific Research Group once a contract is agreed will have access to a disease specific cohort of patient details, who have consented. The DSRG will not be able to amend the data.


Policy Updates

This Policy may change from time to time and is available on our website.


Contact and Concerns

If you have any concerns about this privacy policy, please contact the ARRK project officer on