Apply for linked data - NSW

• Information about data sets in the Master Linkage Key (MLK).
• Examples of additional data sets and how to access these.
• Validation studies for many different data sets.

The Research Project Manager is happy to meet with you or talk over the phone to discuss your project. They can be reached on (phone) (02) 9391 9924 or email

MOH-cherel@health.nsw.gov.au

• The Combined Protocol and Application for Data form

• Flow Chart templates and examples

Please email the completed form to the Research Project Manager at: moh-cherel@health.nsw.gov.au.

The CHeReL will review the form, provide feedback and a quote.

Please allow 5 business days to receive a quote. 

Please note, the NSW Central Cancer Registry (NSW CCR) and the 45 and Up Study may charge a fee for data extraction which is not included in the CHeReL quote. For more information, contact the NSW CCR at CINSW-DARenquiries@health.nsw.gov.au or the 45 and Up Study at 45andup.research@saxinstitute.org.au.

For some additional advice on completing the documentation please consult our CHeReL tips and tricks document found HERE

In most cases you will be required to complete the documents listed below

1. Combined Protocol and Application for Data template
2. Variable lists
3. Human Research Ethics Application (HREA)
4. 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.

The CHeReL will forward your application forms onto relevant Master Linkage Key custodians for their approval and advise you of the outcome.  An additional approval process and application form will be required for studies using 45 and Up data. Please email 45andUp.research@saxinstitute.org.au for details.  

For data sets additional to the MLK, you may seek data custodian approval yourself or request that the CHeReL provide assistance. The CHeReL Research Liaison Officer is happy to meet or teleconference with data custodians to discuss linkage processes, privacy protections and answer any questions they may have.

For the NSW Population and Health Service Research Ethics Committee you will need to include the AFD, variable lists, NEAF, Research Protocol and NSW privacy forms, with your feasibility letter and data custodian sign offs. Please check the ethics committee website for other documents that may be required.

We will confirm all requirements with you before scheduling your linkage.

For updates please email MOH-cherel@health.nsw.gov.au