Request Guidelines
Overview
ANZORRG Registries consider data requests on a case-by-case basis, guided by clear principles to ensure responsible use of Registry data and respect for contributors and participants. We encourage early discussions with Working Group leads about potential projects to avoid duplication and maximise value.
To get in touch with us about requesting data, please email: requests@anzdata.org.au.
Considerations
The following considerations are applied to all requests.
Your request should include:
- The data required and its intended use (including planned analyses)
- The level of data requested (aggregate, de-identified case-level, etc.)
- An undertaking to acknowledge the specific Registry (e.g. ANZDATA or ANZLKD) as the data source
Important:
- Extensive analysis of case-level data is normally undertaken in collaboration with the specific Registry
- We do not approve requests that overlap with active contributor projects (within 12 months of data supply). Where overlap occurs, ANZORRG will work with you and the original project lead to mediate complementary analyses.
Please review the list of current data projects to ensure your proposed request does not duplicate work already in progress.
ANZORRG supports data access for contributing units, clinicians and researchers, and charitable bodies, academic institutions, other registries, and government agencies. These are generally fulfilled without charge.
Requests from industry or other organisations are considered on a case-by-case basis and may incur a processing fee.
Hospital-specific outcomes are generally only released to that hospital, with approval from the head of the contributing department.
Please review ANZDATA's current position and guidance on requests involving patient ethnicity before submitting a request.
Projects requesting individual patient-level data (even if de-identified) for research purposes must have approval from your institution’s Human Research Ethics Committee (HREC). This should be from the HREC that is responsible for the institution where the data is being stored and/or analysed.
If data storage or analysis involves multiple institutions, each institution must provide explicit approval, either ethics approval or site-specific governance as appropriate, in addition to approval from the original HREC.
We have prepared a letter that you may wish to submit with your ethics application. This 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.
- ANZORRG does not release identified individual data, in line with Federal privacy regulations
- Data is released only for approved projects and must not be shared or reused without ANZORRG or the specific Registry’s written consent
Acknowledgement and Publication
It is a condition of use of ANZORRG data that the source of the data is acknowledged, along with a statement that the analysis and interpretation are those of the author, not of ANZORRG or the individual Registry. If an ANZORRG Registry's data is a primary source for your report or publication, please:
- Send us a copy upon publication
- All posters or abstracts and presentations should display the relevant ANZORRG Registry logo in the acknowledgements section
- Use this standard acknowledgment, tailored to your project and the specific Registry that data is derived from:
Click here for all ANZORRG attribution statements and logos“The data that supports the findings of this study were obtained from the [Insert full registry/s name] – data request ID [XXXXX]. Restrictions apply to the availability of these data, which were used under license for this study. Data can be requested via www.anzorrg.org.au subject to the Registry’s data release policies.”
Submitting a Data Request
You can submit your request by:
- Completing the Data Request Form (below) and emailing it to requests@anzdata.org.au, or
- Submitting a request via our Online Data Request Portal