NTCR data release guidelines

Release of data from the Northern Territory Cancer Registry (NTCR) is governed by the NT Cancer (Registration) Act as well as the NT Information Act and Commonwealth Privacy Act.

The following information outlines the process for requesting information held within the NTCR. Requests can be grouped into three broad categories:

  • Aggregate data (ie. the data are presented in summary or statistical format)
  • Unit record data (ie. each row contains details about a single person or case of cancer)
  • Personal cancer information about yourself or someone else

Please consult the NTCR Data Release Flowchart and Data Item List to assist you in preparing your request.

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Aggregate data – approval from the NT Cancer Registrar is required

Aggregate data are grouped data that does not allow for the identification of individuals. This type of information is most commonly presented in a summary table or graph format, with data being grouped by non-identifiable data items such as sex, age group, cancer site and year of diagnosis.

NOTE: Due to the small population in the NT, detailed breakdowns will not be available for some cancers.

Eg. Table 1. Number of cases of small-cell carcinoma of lung by sex and age group, Northern Territory, 2001–2014 combined
Age at diagnosisMalesFemalesTotal
0–29    
30–34    
35–39    
   
80–84    
85+    
Total   

Step 1: Are cancer data from other states and territories required in addition to NT cancer data?

  • If NO (you are requesting NT cancer data only), go to Step 2.
  • If YES (you are requesting national cancer data, either data for each state and territory, or total Australian data), you will first need to develop data specifications through the Australian Cancer Database team at AIHW (cancer@aihw.gov.au). Once your request specifications have been finalised with the ACD team, go to Step 2.

Step 2: Contact the NTCR to lodge your data request and seek approval from the NT Cancer Registrar

Step 3: Approval and release of data

  • Your request will be reviewed by the NT Cancer Registrar, who will then complete SECTION 2 with the details of your data specification and return the form to you for confirmation.
  • Data will only be released once you have reviewed the data specification and signed SECTION 3, agreeing to the conditions of the data release. Return the signed form to the NTCR with any paperwork as requested.
  • If you requested (1) NT cancer data only, NTCR will send the data and the completed form back to you within 10 working days, otherwise (2) the ACD team will send their national data to you directly.

Unit record data – approval from the NT Chief Health Officer is required

Unit record data is the most detailed level of data available from the NTCR. It can be provided in spreadsheet format (csv or Excel workbook) or in a Stata dataset. Each row contains details about a single person or case of cancer, allowing for complex analyses to be carried out.

Unit record data may be:

  • Identifiable: containing personal identifiers such as name, address or date of birth; or
  • Potentially identifiable (de-identified or re-identifiable): does not contain identifiers but may include data items that either singly or when used in combination could identify an individual; or could be re-identified by a unique data item such as Patient ID or Hospital Registration Number (HRN).

All requests for unit record data require approval from the NT Chief Health Officer (CHO). Approvals are subject to review of ethics documentation (applications and approvals) and a research protocol. Studies planning to report separately on the NT, or by Indigenous status, must have approval from the NT DoH/Menzies HREC +/- CAHREC

If identifiable data items are being requested, these must be stated in the ethics application with justification as to why they are required.

If you are planning a project and would like to discuss data availability, ethics requirements or obtain a letter of support to accompany ethics applications, please send an email to NTCancerRegistry.DoH@nt.gov.au.

Eg. Table 2. List of all patients diagnosed with breast cancer by age, sex and postcode, Northern Territory, 2001–2014 combined
Patient IDSexAgePostcode
1    
2    
3    
342    
343    
344    

Step 1: Are cancer data from other states and territories required in addition to NT cancer data?

  • If NO (you are requesting NT cancer data only), go to Step 2.
  • If YES (you are requesting national cancer data, either data for each state and territory, total Australian data or national data linkage studies), you will first need to develop data specifications through the Australian Cancer Database team at AIHW (cancer@aihw.gov.au). Once your request specifications have been finalised with the ACD team, go to Step 3.

Step 2: Does the study involve linkage with other NT or SA datasets?

  • If NO (you are requesting NT cancer data only), go to Step 3.
  • If YES (you require linkage to other datasets from NT and/or SA, you will need to contact SA NT DataLink (santdatalink@unisa.edu.au) to discuss requirements. SA NT DataLink will liaise with NTCR, and advise you of any further steps required.

Step 3: Contact the NTCR to lodge your request and seek approval from the Chief Health Officer

Download the data release agreement form and complete section 1.

If you are requesting NT data only, send an email to NTCancerRegistry.DoH@nt.gov.au with the following information:

  • Data release agreement form with section 1 completed
  • Copies of your ethics documentation (applications and approvals, including NT-specific HREC)
  • A copy of your research protocol, including details of the data items required and methodology

Someone from the NTCR team will contact you to discuss your request and/or advise when CHO approval has been granted. The data will be provided by the NTCR via the secure messaging system SUFEX. Timing of data delivery will depend on the complexity of the request, but will usually be within two weeks of approval.

If you are requesting national data via the ACD, send an email to NTCancerRegistry.DoH@nt.gov.au with the following information:

  • Data release agreement form with section 1 completed
  • Copies of your ethics documentation (applications and approvals, including NT-specific HREC if applicable)
  • A copy of your research protocol, including details of the data items required and methodology
  • The data specifications provided by the ACD team, if applicable

Someone from the NTCR team will contact you to discuss your request and/or advise when CHO approval has been granted. Once your request has been approved the data will be provided by the ACD team. Timing of data delivery can be discussed with the ACD team.

Personal information about yourself or someone else – approval from the NT Chief Health Officer is required

Step 1: About whom are you seeking personal cancer information?

  • If you are requesting access to personal information about yourself, you will need to complete SECTION 1 of the Application for Personal Information form and provide proof of identity.
  • If you are requesting access to personal information about someone other than yourself, such as a relative, you will need to complete SECTION 1 of the Application for Personal Information form and they will need to provide their written consent in SECTION 2. Both you and the other person must provide proof of identity.
  • If you are requesting access to personal information about someone other than yourself who cannot provide consent because they are deceased or incapacitated, you will need to complete SECTION 1 of the Application for Personal Information form and provide detailed information about what information is sought, the reason the information is being sought, and your relationship to the person you are requesting information about

Step 2: Contact the NTCR to lodge your request and seek approval from the Chief Health Officer

  • Send your completed application along with copies of proof of identity to the address below. For confidentiality reasons, PLEASE DO NOT SEND YOUR APPLICATION VIA EMAIL.
  • NT Cancer Registry, Northern Territory Health, Innovation and Research, PO Box 40596, Casuarina NT 8010

Step 3: Approval and release of data

  • By law, the NTCR can only release personal information with the approval of the NT Chief Health Officer and once this permission is granted, the information you have requested will be forwarded to you by mail. We aim to complete all applications for personal information within 30 days.

Last updated: 16 July 2019