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:
- BreastScreen NSW
- NSW Cancer Registry (NSWCR)
- NSW Clinical Cancer Registry (2008-2012)
- NSW and ACT Hereditary Cancer Registry (HCR)
- Prostate Cancer Outcomes Registry – NSW (PCOR-NSW)
- NSW Quitline
- Cancer Institute NSW Tobacco Tracking Survey
- NSW Cancer Registry All Radiotherapies Data (NSWCR ARtD)
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 cancer incidence and mortality release.
Data available for unlinked unit record requests:
- Invasive primary cancer cases:
- Incidence: 1972-2021
- Mortality: 1972-2021
- In-situ cancer cases for breast cancer and melanoma only:
- Incidence: 2002-2021
- Mortality: 2002-2021
- Clinical episodes of care: 2013 only
Next data release:
- Cancer statistics NSW:
- 2022 NSW cancer incidence and mortality (due second half 2024)
- Unlinked unit record data:
- 2022 NSW cancer incidence and mortality (due second half 2024)
Notes:
- 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:
- Data dictionary - 2021 NSW cancer incidence and mortality (PDF)
- Data dictionary - 2021 NSW preliminary cancer incidence (PDF)
- Data variable request form (unit record data) (Word Doc)
- Data custodian sign off form (Word Doc)
Caveats and release notes:
- Caveat on Use of Data - 2021 preliminary incidence data (PDF)
- Caveat on Use of Data Item - Place of Death (PDF)
- Caveat on Use of Data Item - Degree of Spread (PDF)
- Caveat on Use of Data Item - Day of Diagnosis (PDF)
- Changes relating to the 2021 cancer incidence and mortality data release (PDF)
Data custodian: Data Governance Manager
Data availability: 1991-present
Data custodian: Manager, Business Intelligence and Information Systems, Cancer Screening and Prevention
Data availability: 2008–2012
Next release: No further releases. Clinical data for 2013 are available via the NSW Cancer Registry.
- Data dictionary (PDF)
- Data variable request form (Word Doc)
- Data custodian sign off form (Word Doc)
- Whitepaper: CINSW Clinical Cancer Data 2008–2012 (PDF)
Data custodian: Data Governance Manager
Data availability: 2005 - present
- Data access policy (.docx)
- Data request and data custodian sign off form (.docx)
- CITTS Data Quality Statement (.docx)
Data custodian: Manager, Business Intelligence and Information Systems, Cancer Screening and Prevention
Email: CINSW-ScreeningAndPreventionData@health.nsw.gov.au
More information on Cancer Institute NSW Tobacco Tracking Survey >
Data availability: Feb 2016 - Present
Data elements
NSW Quitline contains data relating to people’s interactions with Quitline, including:
- Referrals
- Calls (inbound and outbound)
Forms:
Data custodian: Manager, Business Intelligence and Information Systems, Cancer Screening and Prevention
Please note that the Prostate Cancer Outcomes Registry – NSW (PCOR-NSW) was formerly known as the NSW Prostate Clinical Cancer Registry (PCCR).
Your correspondence from the registry may reflect the former name. We apologise for the confusion this may cause and encourage you to contact us should you wish to discuss it further. This name change is necessary for improved alignment with other participating jurisdictions across Australia and New Zealand.
Data version: Version 1.0
Data available for unit record requests: 01 January 2015 to 31 December 2022
Next data release: Annual data release by calendar year – due in Quarter 2 annually
Data documentation:
PCOR-NSW Data Access Policy v1.5 (PDF)
PCOR-NSW Data dictionary v1.0 (PDF)
PCOR-NSW Data quality statement v1.1 (PDF)
PCOR-NSW Data request form v1.0 (Excel document)
Data Custodian sign off form (Word docx) – or email approval accepted
Summary:
The Prostate Cancer Outcomes Registry-NSW (PCOR-NSW) is a prospective cancer registry that captures diagnosis, treatment, prostate cancer specific quality of life and mortality data for eligible participants diagnosed/treated with prostate cancer in NSW held by Cancer Institute NSW. The PCOR-NSW is the NSW arm of the Prostate Cancer Outcomes Registry– Australia and New Zealand (PCOR-ANZ) (https://prostatecancerregistry.org).
PCOR-NSW includes information on demographics, diagnosis, treatment, and survey results.
The PCOR-NSW has been in operation since February 2016 and includes data on eligible participants diagnosed with or treated for prostate cancer from 1 January 2015. PCOR-NSW is not currently a population-based dataset.
Please email us at CINSW-DARenquiries@health.nsw.gov.au 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: Data Governance Manager
Contact us for advice or if you have questions via the email below and one of our team will respond.
Email: CINSW-DARenquiries@health.nsw.gov.au
Data availability: Most recent year: 2023 (up to date)
Next release: The HCR is updated on an ongoing basis
Historical series:
- Familial adenomatous polyposis (FAP): 1990–2023
- Lynch syndrome: 1992–2023
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
Email: CINSW-HCR@health.nsw.gov.au.
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
Summary:
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 CINSW-DARenquiries@health.nsw.gov.au 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
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.
Documentation
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 CINSW-DARenquiries@health.nsw.gov.au.
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
Cost
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 CINSW-DARenquiries@health.nsw.gov.au or call us on 02 8374 5600 if you have any questions or require further information.