The Australian Spine Registry must comply with state-based Privacy Acts, such as the Victorian Privacy and Data Protection Act 2014 and the Victorian Health Records Act 2001.
All information collected is entered into a secure database via the secure Australian Spine Registry data entry website. Access to this website is only made available to Australian Spine Registry study staff via password-protected secure login.
The primary role of an ethics committee is to protect the welfare and rights of research participants. Australian Human Research Ethics Committees (HRECs) are generally comprised of people with and without a health research background who, as a group, will only approve a study if it is conducted with integrity and respects the welfare of participants. Because the Australian Spine Registry pilot involves the collaboration of multiple hospitals, this study has been reviewed and approved by multiple HRECs.
All aspects of the Australian Spine Registry pilot have been ethically reviewed and are conducted and monitored in accordance with:
- The Australian Government’s National Health and Medical Research Council’s (NHMRC) National Statement on Ethical Conduct in Human Research (2007; May 2015 Update).
- The Australian Code for the Responsible Conduct of Research (2007).
This means that this work must have research merit and be conducted with integrity, justice, beneficence and respect.
The registry will also provide regular ongoing reports to the multiple ethics committees overseeing the project. These reports will describe study progress, data security, and any other issues of ethical relevance.
The Australian Spine Registry is an initiative of the Spine Society of Australia in conjunction with the Department of Epidemiology and Preventative Medicine, Monash University.
Monash University has expertise safeguarding private information as they supervise and run numerous registries. All data collected are stored on a computer server within a high security health research environment.