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
NONONONO
De-identified data Tabular summary data
(to state level)
NONONOYES
Single line data
(centre identifiable)
NO YES –
if research^
NOYES
Identifiable dataTabular summary data
(centre identified)
YES –
if sensitive
NONOYES
Single line data
(centre identifiable)
YES –
if sensitive
YES –
if research
NOYES
Single line data
(patient identifiable)
YESYES –
if research
NONO
NOMS / NZBS / Baxter Healthcare data Tabular summary dataNONOYES*YES
Single line
(de-identified)
NOYESYES*YES
Single line
(identified)
YESYESYESYES
Data LinkageResearch projectNOYESNOYES – 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 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 requests@anzdata.org.au if you have any questions regarding the data request approvals process.