Apply for linked data - NSW

The diagram below describes the steps involved in gaining approval to access NSW data. More detailed information about each step can be viewed via the ‘Read more’ button. If you are an employee of NSW Health and will be using data for funding, management, planning or evaluation purposes please contact us. The steps below detail the process for all research related data requests.


Step 2 - Contact the CHeReL

We have a dedicated Research Liaison Officer who can provide individual advice.

The Research Liaison Officer 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 cherel.mail@moh.health.nsw.gov.au.


Step 3 - Complete the CHeReL application form

The Application for Data (AFD) form outlines your project, the datasets and linkage required.

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

The CHeReL will review the form, provide feedback and 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 DARenquiries@cancerinstitute.org.au or the 45 and Up Study at 45andup.research@saxinstitute.org.au.


Step 4 - Complete approval documents and send to the CHeReL

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

  1. AFD
  2. Variable lists
  3. National Ethics Application Form (NEAF)
  4. NSW Privacy Form
  5. Research Protocol

Studies linking data owned by the NSW Ministry of Health or the Cancer Institute NSW must seek approval from the NSW Population and Health Service Research Ethics Committee. This committee requires submission of a National Ethics Application Form, a Research Protocol (template available at:http://www.cancerinstitute.org.au/research-grants-and-funding/ethics/nsw-population-health-services-research-ethics-committee), the NSW Privacy Form (www.cancerinstitute.org.au/research-grants-and-funding/ethics/nsw-population-health-services-research-ethics-committee), and variable lists.

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 (go to: www.cherel.org.au/external-datasets#section8). 

Ensure that the information in the NEAF and Research Protocol 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.


Step 5 - Technical feasibility letter and data custodian approval

The CHeReL will provide a technical feasibility letter that must accompany your ethics application. The CHeReL will seek data custodian approval on your behalf for data sets in the Master Linkage Key.

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.


Step 6 - Submit to the Ethics Committee

Submit your data custodian approvals, technical feasibility letters and all application documents to the ethics committee.

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.


Step 7 - Notify the CHeReL of your approval

When you are advised of ethical approval, please notify the CHeReL and forward all documents listed on your approval letter.

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

For updates please email cherel.mail@moh.health.nsw.gov.au