Data Use

In general, only de-identified data is released. Exceptions to this are data linkage projects, where there is ethics committee approval specifically for release of identified data for data linkage. Contributing units also have access to view, receive and review their own identifiable data.

• Where adequate for a project, release of aggregate data (group level), is preferred to the release of individual line data
• Only data fields required for analysis of the issues/questions identified in any given request will be released

• Data sets released are only approved for use in the specified project, subsequent use for other projects will require further approval in consultation with the Registry
• Where individual line datasets are provided, responsibility for design, conduct and interpretation of analyses lies with the requestor. A disclaimer should be included in any publications arising from these data sets
• Details of the database structure are available in the data set specification documents
• Although much effort is put into collecting and recording data accurately, as in any large database, there may be occasional errors, for which ANZORRG does not take responsibility

• ANZORGG will keep and show on its website a list of the data requests (the name of the requestor and the title)
• Where a subsequent request is received for a similar or overlapping area, we will endeavour to identify requestors with similar or overlapping proposals, but cannot guarantee to do so
• Where there are overlapping requests, data will not be released for the subsequent request within twelve months of provision of data for the original request

• Priority for data access is given to ANZORRG contributors and funders. Where requests are received from external parties, collaboration with a contributor is strongly encouraged
• Identification of a local contributor is essential for release of identified individual line datasets – this person then acts as the “guarantor” of appropriate use and interpretation of the data and analyses
• For release of New Zealand individual line datasets, involvement of a New Zealand contributor is highly desirable and consultation with Māori may be appropriate
• Individual line data will not be released to corporations. Where requests are received, these analyses are performed “in-house”. These are generally performed on a cost recovery basis, taking into account other contributions to the Registry

• The requirement for ethics committee approval depends on the nature of the project. For many clinical audits or similar projects, this will not be required, but is often appropriate for research studies
• Formal ethics approval and oversight is mandatory for data linkage studies
• Where the need for ethics oversight is unclear, the requestor will be asked to seek advice from their local health research ethics committees, external to ANZORRG

• Australian transplant waiting list and some other transplant data are supplied by OrganMatch Australia. Approval for use of this data outside the terms stipulated in the joint memorandum of understanding is required from OrganMatch, in addition to ANZORRG or ANZDATA
• New Zealand transplant waiting list and some other transplant data are supplied by the New Zealand Blood Service (NZBS). Approval for use of this data outside the terms stipulated in the joint memorandum of understanding is required from the New Zealand Transplant Leadership Team, in addition to ANZORRG or ANZDATA