Request unlinked unit record data for research

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: NSW Cancer Registry (NSWCR) 2018 NSW preliminary cancer incidence release. Please note data for 2018 incidence are incomplete - see caveat for more information. 

Data available for unlinked unit record requests: 

  • Invasive primary cancer cases:
    • Incidence: 1972-2018
    • Mortality: 1972-2017
  • In-situ cancer cases for breast cancer and melanoma only:
    • Incidence: 2002-2018
    • Mortality: 2002-2017
  • Clinical episodes of care: 2013 only

Next data release: 

  • Cancer statistics NSW:
    • 2018 NSW cancer incidence and mortality (due second half 2021)
  • Unlinked unit record data:
    • 2018 NSW cancer incidence and mortality (due second half 2021)

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:

Caveats and release notes:

Data custodian: Data Governance Manager

Email: CINSW-DARenquiries@health.nsw.gov.au

Data availability: 1991-present

Next release: 2018

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

Email: CINSW-ScreeningAndPreventionData@health.nsw.gov.au.

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: Research Liaison and Data Custodian

Email: CINSW-DARenquiries@health.nsw.gov.au

More information on the NSW Clinical Cancer Registry (2008–2012).

Data availability: 

The CITTS data is accessible via four modularised data files upon request:

  1. Demographics – excludes postcode, Aboriginality, specific language spoken at home and sexual orientation
  2. Campaign Recall (unprompted awareness)
  3. Campaign Recognition and Diagnostics
  4. Smoking and Quitting

The Demographics and Smoking and Quitting modules will be updated every six months until the collection ceases. They will be released according to the following schedule:

  • 30 April - which will include data from July to December of the previous year; and
  • 31 October - which will include data from January to June of the same year.

Note: the Demographics and Smoking and Quitting modules available for release contain data from 2005 to 2015.

The Campaign Recall and Campaign Recognition and Diagnostics modules will be released according to the following schedule:

  • 31 October - which will include data from January to December of the previous year.

Note: the Campaign Recall and Campaign Recognition and Diagnostics modules available for release contain data from 2005 to 2014.

Data elements

Data dictionaries for each of the four modularised data files are available upon request.

Data quality

Refer to the CITTS Data Quality Statement.

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: 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

Forms:

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

Email: CINSW-ScreeningAndPreventionData@health.nsw.gov.au.

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

Email: DARenquiries@cancerinstitute.org.au.

More information on 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

Email: CINSW-HCR@health.nsw.gov.au.

Data request flow chart for unlinked data

Step 1
Step 1
Data custodian (DC) approval
Researcher submits documentation for data custodian (DC) approval to the relevant Cancer Institute NSW team.
 
Step 2
Step 2
Cost
Some requests may encounter a cost. We will review your request and if a cost is likely, provide estimated costs to you to approve.
Step 3
Step 3
NSW Population and Health Services Research Ethics Committee (PHSREC) approval
Access to unit record data of any dataset held by the Cancer Institute NSW requires approval from PHSREC. Please visit the NSW PHSREC webpage for more information. Once approved, the researcher will need to supply all approved documentation to the relevant Cancer Institute NSW team.
Step 4
Step 4
NSW Ministry of Health (MoH) or delegate - approval to disclose (AID)
Staff of the Cancer Institute NSW data team requests approval for the release of data from the NSW MoH or delegated authority.
Step 5
Step 5
Data delivery and payment
Researcher signs the confidentiality undertaking (prepared in step 4). Data extract and checking prior to data supply.If relevant, researcher is invoiced 7 to 15 working days after receipt of data.

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

All studies requesting linked or unlinked unit record data will need to have the documentation as listed on the NSW PHSREC webpage.

In addition to the documentation on the NSW PHSREC webpage, unlinked studies will also need to provide a signed data custodian form and unit record data request form.

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 (incl 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.

View or request summary cancer statistics NSW Prostate Clinical Cancer Registry

Tags:

Cancer data
Creative Commons Attribution 4.0 International License. Attribution 4.0 International