Data requests are received and considered by the ANZDATA Executive following principles agreed by the Steering Committee. The implementation of this is performed by ANZDATA staff under the direction of ANZDATA Executive.
Typical procedure for data requests
Approvals required by request type
| Head of unit Approval | Local HREC Approval | OrganMatch | NZTLT | Baxter Approval | Executive Approval* | ||
| Publicly available data | Data already published by ANZDATA | NO | NO | NO | NO |
| De-identified data | Tabular summary data (to state level) | NO | NO | NO | YES |
| Single line data (centre identifiable) | NO | YES – if research^ | NO | YES | |
| Identifiable data | Tabular summary data (centre identified) | YES – if sensitive | NO | NO | YES |
| Single line data (centre identifiable) | YES – if sensitive | YES – if research | NO | YES | |
| Single line data (patient identifiable) | YES | YES – if research | NO | NO | |
| NOMS / NZBS / Baxter Healthcare data | Tabular summary data | NO | NO | YES* | YES |
| Single line (de-identified) | NO | YES | YES* | YES | |
| Single line (identified) | YES | YES | YES | YES | |
| Data Linkage | Research project | NO | YES | NO | YES – Full |
* De-identified NZBS data relating to fact and date of wait-listing for transplantation does not require NZTLT approval prior to data release.
+Except in the case of data-linkage requests, executive approval may be delegate to the requests manager.
ˆ Note that from March 2018, all external requests for line data to be used for research purposes must have evidence of local HREC approval or a letter confirming the study is exempt from HREC review.
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.
