Request Procedure

Request Procedure Overview

The typical procedure for data requests can be downloaded below. ANZORRG staff can assist with the preparation of your data request, if unsure how to proceed.

Request Procedure Flow

Approvals Required by Data Type

The table below provides a summary of the approvals required by data type

Data Type	Head of Unit Approval	Local Human Research Ethics Approval	Linked External Custodian Approval	Registry-Specific Governance Approval
Publicly Available Data
Data already published by Registries	No	No	No	No
De-identified Data
Tabular summary data (to State level)	No	No	No	Yes
Single line data	No	Yes (for research purposes)^	No	Yes
Identifiable data
Tabular summary data (facility identified)	Yes	No	Yes	Yes
Single line data (facility identified)	Yes	Yes (for research purposes)^	Yes	Yes
Single line data (patient identified)	Yes	Yes (for research purposes)^	Yes	Yes
OrganMatch/NZBS data
Tabular summary data	No	No	Yes*	Yes
Single line (de-identified)	No	Yes	Yes*	Yes
Single line data (identified)	Yes	Yes	Yes	Yes

*De-identified NZBS data relating to fact and date of wait-listing for transplantation does not require NZTLT approval prior to data release

ˆAll 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

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.

Letter for local HREC applications

Download our letter outlining information for local HREC applications relating to the use of de-identified data

Download

Working Group Requests Pro Forma

Download our Pro Forma outlining the requirements for Requests looking to gain approval from relevant Working Groups