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.
All data projects requesting line 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. 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 email@example.com if you have any questions regarding the data request approvals process.