Information and Privacy
Protecting your privacy is paramount. There is a very strict governance structure that oversees the registry activities to ensure that patients’ privacy is protected at all times. The registry has been designed in accordance with the strictest privacy principles, including State and Commonwealth privacy laws. It should be noted that the data to be collected remains under the custodianship of Monash University Department of Epidemiology and Preventative Medicine. Data will not be used in a way that will allow individual patients to be identified. Publication will be restricted to statistical tabulation of aggregate data only. The data will be handled by an experienced university research unit with careful attention paid to privacy and security of the information.
The information collect will:
• Comply with all privacy legislations;
• Remain confidential and never be released in a way that could potentially identify a specific Individual: the information provided will only ever be used by bona fide researchers with ethical approval; and
• Be stored securely with access restricted only to registry staff, each of whom is committed to maintaining confidentiality.