Data is collected via the online research data collection platform, REDCap, using the Australian National University (ANU) REDCap license. All collected data will be stored securely on ANU servers.

Any data exported from the Registry will be de-identified. De-identified data means any identifiable information has been removed so that individuals cannot be recognised in the data set. Requests for access to the data by those outside the research team will be considered by the Principal Investigator; however, all studies must have the appropriate approvals prior to access (Institutional Review Board/Human Research Ethics Committee). These data requests are only available for de-identified data.