Data requests will be considered within several broad headings.

Nature of Request

The request should include the information sought, the usage proposed (including further analyses if appropriate) and an undertaking that the source of the data will be acknowledged. An indication of the level of the data requested should be given. (Extensive analysis of case-level data would normally be undertaken as part of a collaborative effort with the Registry.) We may also provide advice about the methods of analysis, or may suggest other sources of advice to ensure the best use is made of the data.

Currently ANZDATA does not approve data requests where they directly overlap active projects of contributors (defined as within 12 months of original supply of data). The aim of this is to prevent unintentional duplication of analyses. In these circumstances, the working group head or executive officer will liaise with the requesting party, usually in collaboration with the original party, with a view to mediating complementary analyses. We encourage early discussion of potential projects with working group heads to identify areas for potential analysis.

Nature of Requesting Party

In general, requests from renal physicians, renal unit staff, charitable bodies, academic institutions, other registries and government departments are fulfilled without charge. Priority is given to requests from contributing renal units and funders. Individual hospital outcomes will usually only be released to people from that institution with the approval of the head of the contributing department. Requests from industry and other bodies are considered on a case-by-case basis, and may be subject to a processing fee.

The Registry is a collaborative effort of the Renal community in Australia and New Zealand. It is usual practice that requests for data for research would be made in conjunction with a contributing renal unit.

Requests Relating to Patient Ethnicity

In December 2021, ANZDATA updated its position on providing data for requests relating to patient ethnicity as endorsed by the ANZDATA Executive Committee.  Please familiarise yourself with this update prior to submitting a data request.

Ethics Approval

All data projects requesting individual patient level data to be used for research purposes (including de-identified data) require approval from the researcher’s local Human Research and Ethics Committee (HREC) prior to data release. This should be from the HREC which is responsible for the institution where the data is being stored and/or analysed. Where data storage/analysis is being conducted over more than one institution, then additional institutions also need explicit approval (either ethics approval or site-specific governance as appropriate) from the HREC or Research Governance overseeing activities at that institution as well as approval from the original approving HREC.  We have a prepared a letter that you may wish to submit with your ethics application that gives background about the Registry and our data release policies. Please contact us at requests@anzdata.org.au if you have any questions regarding the data request approvals process.

Federal Privacy Regulation

The recent Commonwealth Privacy Act impacts on release of some forms of data. In particular, identified individual data will not be released. (In any case this has not been the practice of the registry in the past).

Secondary Release of Data

Data is released to specific people for specific projects; use for other projects or release to other people is not permitted without prior ANZDATA approval.

Acknowledgement

If data from ANZDATA is the primary source for a report or publication, a copy of this should be sent to ANZDATA when published. It is a condition of use of ANZDATA that the source of the data is acknowledged, along with a statement that the analysis and interpretation are those of the author, not ANZDATA.

Data Release Statement:

“The data that supports the findings of this study were obtained from the Australia and New Zealand Dialysis and Transplant Registry (ANZDATA) – data request ID XXXXX. Restrictions apply to the availability of these data, which were used under license for this study. Data are available from www.anzdata.org.au, subject to the registry’s data release policies.”

Submitting Data Requests

Data requests can be submitted by either downloading our data request form using the link below, and emailing the request form to requests@anzdata.org.au or simply submitting a data request online, using the button below.