Request unit record data for research

Access to unit record data requires the initial approval of the relevant data custodian. There may be a cost for this type of request. You can also get access to data dictionaries, caveats and request forms.

Request unit record data for research

Data requested direct from Cancer Institute NSW may be subject to cost recovery.  Should you request data from us we will contact you regarding any potential cost to obtain your approval to proceed.

If you're wanting linked data that includes one or more of the datasets below, take a look at our CanDLe program or contact the Centre for Health Record Linkage (CHeReL) or the Australian Institute of Health and Welfare (AIHW) who hold national cancer data in the Australian Cancer Database.

Data that is available for unit record requests includes the following:

The data set below is scheduled for release in 2023:

  • NSW Prostate Clinical Cancer Registry (PCCR)

If you're a researcher wanting to recruit people to a study, please contact our dedicated patient recruitment services team

Unit record data

Unit record data refers to information relating to an individual person, such as name, sex, date of birth, date of cancer diagnosis, date of screening and cancer type. 

Unit record data are available as either identified or de-identified (potentially re-identifiable) or non-identifiable.(Show more)

Unlinked unit record data

Unlinked unit record data refers to unit record data for a single dataset, such as the NSW Cancer Registry or BreastScreen NSW.

Data sets, variables, request forms and data dictionaries

Data version: 2021 NSW preliminary cancer incidence release. Please note incidence for 2021 are incomplete - see caveat for more information. 

Data available for unlinked unit record requests: 

  • Invasive primary cancer cases:
    • Incidence: 1972-2021
    • Mortality: 1972-2020
  • In-situ cancer cases for breast cancer and melanoma only:
    • Incidence: 2002-2021
    • Mortality: 2002-2020
  • Clinical episodes of care: 2013 only

Next data release: 

  • Cancer statistics NSW:
    • 2021 NSW cancer incidence and mortality (due second half 2023)
  • Unlinked unit record data:
    • 2021 NSW cancer incidence and mortality (due second half 2023)


  • More information on the NSW Cancer Registry.
  • In-situ cases for breast cancer and melanoma are collected by the NSWCR but are not included in any statistical reporting. They are not registered according to the same standard coding rules as invasive cancers, thus they should not be included with or compared to invasive breast cancer or melanoma incidence and mortality statistics.
  • The NSWCR does not currently have population coverage of clinical episodes of care data. The NSWCR is working to increase the coverage and quality of clinical data items. We encourage researchers to provide feedback about the clinical data which will be used to better understand and inform the use of the clinical data.

Data dictionary and forms:

Caveats and release notes:

Data custodian: Data Governance Manager


Data availability: 1991-present

Data custodian: Manager, Business Intelligence and Information Systems, Cancer Screening and Prevention


More information on Breastscreen NSW >

Data availability: 2008–2012

Next release: No further releases. Clinical data for 2013 are available via the NSW Cancer Registry.

Data custodian: Data Governance Manager


More information about the NSW Clinical Cancer Registry >

Data availability: 2005 - present

Data custodian: Manager, Business Intelligence and Information Systems, Cancer Screening and Prevention


More information on Cancer Institute NSW Tobacco Tracking Survey >

Data availability: From July 2018

Next release: Mid 2020 (data are released every six months)

Historical series: Feb 2016 to 2018

Data elements

NSW Quitline contains data relating to people’s interactions with Quitline, including:

  • Referrals
  • Calls (inbound and outbound)
  • Enrolments


Data custodian: Manager, Business Intelligence and Information Systems, Cancer Screening and Prevention


More information about NSW Quitline >

Data availability: Data collection commenced in January 2016 for men diagnosed from 1 January 2015. 

Data quality

Data quality is assured by:

  • regular checks of completeness of data items
  • investigation of incomplete reporting
  • de-duplication processes
  • training and review of data collection staff and adherence to guidelines by data collection staff.
  • Data custodian sign off form

Data custodian: Director, Cancer Services and Information


More information about NSW Prostate Clinical Cancer Registry data >

Data availability: Most recent year: 2019 (up to date)

Next release: The HCR is updated on an ongoing basis

Historical series:

  • Familial adenomatous polyposis (FAP): 1990–2019
  • Lynch syndrome: 1992–2019

Data elements

The HCR includes:

  • information about the registrant, including demographic and contact details
  • details about the hereditary cancer syndrome, genetic testing and surveillance plans
  • information about the registering clinician
  • information about the family pedigree

Data custodian: Director, Cancer Services and Information, Cancer Institute NSW


More information about the NSW and ACT Hereditary Cancer Registry >

Data version: Version 1.0 

Data available for unit record requests: 1 January 2013 to 31 December 2022

Next data release: Annual data release by calendar year – due in Quarter 2 annually

Data documentation:

NSWCR All Radiotherapies Data dictionary v1.0 (PDF) 
NSWCR All Radiotherapies Data quality statement v1.0 (Word docx)
NSWCR ARtD Data request form v1.0 (Excel document)
NSW Cancer Registry Data custodian sign off form (Word docx) – or email approval accepted


The NSWCR ARtD captures all radiotherapy treatments for notifiable cancers treated in radiation oncology centres and hospitals in NSW public and private facilities for people who began a course of treatment starting 01 January 2013 to 31 December 2022. 
The dataset includes information on diagnosis, stage, treatment, and quality of care indicators. Within NSWCR ARtD there are two types of data sources: electronic radiation oncology data (EROD) and admitted patient episodes.  

The primary purpose of radiation oncology departments and centres is to treat patients with accurately measured doses of radiation, as available in the NSWCR ARtD. Information relating to cancer diagnoses is less reliable and the Cancer Institute NSW recommends that cancer diagnosis information is sourced from the NSWCR, as this contains the highest quality information on cancer diagnosis.

Please email us at for more information about this data set.

Data application:

Requests for this data require review and approval by the Data Custodian prior to submission to the NSW Population and Health Services Research Ethics Committee. Please see their webpage for more information about requirements for access to NSW health data.

Data custodian: NSWCR Data Custodian

Contact us for advice or if you have questions via the email below and one of our team will respond.



Timeframes for approvals for unlinked de-identified unit record data are dependent on the documentation submitted.  If documentation is complete and major revisions are not required, requests are usually approved in approximately three months. Once approved, data is usually released in approximately one month. Please note that this is an average timeframe and not all data requests can be completed within this time.


Requests for unit record data held by the Cancer Institute NSW require signed data custodian approval before submission to the NSW PHSREC. For your study to be reviewed, the documentation as listed on the NSW PHSREC website needs to be supplied, with your request for approval to

Data management requirements

There are particular data management requirements when requesting NSW health data. Researchers must comply with the following requirements, which should be specified in your research protocol. There may be additional requirements depending on the project.

  • Data is required to be stored on a password-protected local area network, and not on the cloud or any portable devices including external drives, laptops or desktop computers
  • Data are to be kept in a secure physical and electronic environment that is accessible only by persons directly involved in the above project
  • Data storage and retention should be clearly stated and follow best practice recommendations
  • Data transfer methods should comply with the above points, and be clearly stated and follow best practice recommendations
  • The type of data (identified etc.) requested and who will have access to the data should be clearly specified


An estimated quote will be provided, if relevant, for approval prior to any work commencing on your request.

The first hour of effort is provided gratis.  The current hourly rate is $168.00/hour (excl GST). 

Patient recruitment service

The Data Access and Research Liaison Service offers a patient recruitment service.

This service is only provided for research approved by the NSW Population and Health Services Research Ethics Committee. This service identifies patients within the NSW Cancer Registry who are eligible for an approved research study, and will contact them or their clinicians for recruitment into the study.

The service also can review and abstract approved data variables from pathology notifications that are not available in the NSW Cancer Registry data dictionary. Patient consent or a waiver of consent is required for these studies.

Learn more about the patient recruitment service and how it can support your next research project.

Contact us

Please contact or call us on 02 8374 5600 if you have any questions or require further information.