All studies using linked data must have an appropriate legal basis and in most cases require ethical approval.
In most cases you will be required to complete the documents listed below
- Combined Protocol and Application for Data template
- Variable lists
- Human Research Ethics Application (HREA)
- NSW Privacy Form
If you require ethics approval and are using data owned by the NSW Ministry of Health or the Cancer Institute NSW you must seek approval from the NSW Population and Health Service Research Ethics Committee. This committee requires submission of a Human Research Ethics Application (HREA), a Combined Protocol and Application for Data Template (template available at:https://www.cancer.nsw.gov.au/research-and-data/nsw-population-health-services-research-ethics-com/how-to-apply), the NSW Privacy Form (https://www.cancer.nsw.gov.au/research-and-data/nsw-population-health-services-research-ethics-com/how-to-apply), and variable lists. Please see the NSW PHSREC website for a comprehensive description of thier submission guidelines https://www.cancer.nsw.gov.au/research-and-data/nsw-population-health-services-research-ethics-com/how-to-apply. Please note, ethics applications are now submitted through REGIS.
For advice and guidance regarding the ethical issues of your study, please contact the ethics secretariat at: ethics@cancerinstitute.org.au.
Studies using datasets owned by individual Local Health Districts, as opposed to state-wide datasets owned by the NSW Ministry of Health, may require local ethics and governance approval. LHD ethics committees and their contact details for ethics and governance issues can be found HERE.
Variable lists for each of the collections are available on the data dictionaries page of this website. An external variable checklist template can be downloaded from the website HERE.
Ensure that the information in the HREA and Combined Protocol/CHeReL form regarding the datasets and linkage is identical to that specified in the AFD. Please note: If the two sets of information differ, there may be significant delays in the approval of the study and provision of data, as amendments and/or additional data custodian approvals will need to be obtained.
Send the completed documents to the CHeReL for review.