The ANZDATA Registry encourages widespread use of its data for a variety of purposes, including:

  • quality assurance
  • audit
  • surveys
  • reports and
  • research projects.

We welcome enquiries as to the use and interpretation of the information we collect. An important first step is to check both the main section and appendices of the most recent Annual Report as this contains much information.

There are specific conditions which apply to use of de-identified data extracts, summarised in the data use agreements.

Data Custodianship and Release

The following are our current data release principles. For more information on how to request data from ANZDATA visit our Data request page.

Encourage data use

Data extracts will be made available to contributors of ANZDATA on request, provided evidence of appropriate expertise for analysis/interpretation is shown by the requestor.

Protect privacy

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.

Encourage efficiency

  • 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.

Protect data integrity

  • 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 and ANZDATA are available to explain the structure of the data set.
  • Although much effort is put into collecting and recording data accurately, as in any large database, there may be occasional errors, for which ANZDATA does not take responsibility.

Transparency

  • ANZDATA 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 6 months of provision of data for the original request.

Prioritize contributors and funders

  • Priority for data access is given to ANZDATA 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 ANZDATA 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.

Ensure ethical research practices

  • 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 ANZDATA.

Recognise custodianship of linked data from external sources

  • Australian transplant waiting list and some other transplant data are supplied by National Organ Matching Service (NOMS). Approval for use of this data outside the terms stipulated in the joint memorandum of understanding is required from NOMS, in addition to 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 ANZDATA.