Data requests

Researchers and clinicians can request data from Te Rēhita Mate Ūtaetae - Breast Cancer Foundation National Register by completing the data request form below. To ensure patient privacy and confidentiality Te Rēhita Mate Ūtaetae will only release de-identified data for research purposes. A secure de-identified pathway will be used when Te Rēhita Mate Ūtaetae data is linked with other datasets.

Unique randomised patient numbers are provided in each research dataset extract. This is to ensure a high privacy environment where Researchers with more than one project cannot link patient numbers between projects.

• Information on Te Rēhita Mate Ūtaetae - Breast Cancer Foundation National Register
• Data request process
• Pricing information
• Funding for research
• Patient eligibility criteria

Te Rēhita Mate Ūtaetae - Breast Cancer Foundation National Register collects information on:

• Demographics (NHI, name, age, ethnicity, postcode)
• Diagnosis (breast symptoms and referral)
• Family history and risk factors
• Faster cancer treatment
• Surgery
• Histology
• Therapies
• Follow-up
• Loco-regional recurrence
• Advanced breast cancer

You can learn more about this information here.

1. Review the list of data fields available by downloading the file below. Please call 0800 005 849 to discuss your research requirements with your data manager. Data requests will incur a cost, which will depend on the complexity of the request. We will advise the cost with the data request approval.
   Data Fields List
2. Complete the Data Request Form online and submit it. You will need to attach your research proposal. Ethics approval can be submitted with your request or at a later date.
   Data Request Form
3. Once submitted, your request will be reviewed. The review process will depend upon the type of data requested.

a) Data requests that require individual ethics approval, data linkage, are multi-regional or national, or are for non-audit purposes will be reviewed by the Clinical Advisory Group (CAG). Your data manager will notify you of the decision. This typically takes one to two months.

b) Data requests for one region (i.e. local clinical specialist/hospital use and audit data). Data managers and the local breast cancer specialist can extract their patient data for audit purposes or for use at a clinical level. This information may only be used internally by the patient carer’s institution and may not be published. The applicant will gain ethical approval from their regional governance group as required. For audits that will be published or is part of a pilot study, then institutional (hospital or university) ethical review may be required. If required, the request may be referred onto the CAG. For more information about CAG members click here.

The Clinical Advisory Group (CAG) is responsible for the scientific, ethical and cultural review of all applications for data from Te Rēhita Mate Ūtaetae - Breast Cancer Foundation National Register except for local data requests. The CAG takes into account:

• The extent to which your research will improve breast cancer treatment and outcomes
• Whether your research duplicates or overlaps with previous or current research
• Whether the findings will be published/how the data will be used
• Whether there will be any conditions, e.g. formal acknowledgement, review of draft report prior to publication, costs etc.

A standard data request fee is $10,000 + GST.

This fee covers data extraction and data cleaning. However the fee is dependent on a number of variables such as funding ability, type of request, number of fields and data linkage requirements. The CAG will determine the final fee. A data request fee is payable after the data has been sent to the Researcher.

Te Rēhita Mate Ūtaetae - Breast Cancer Foundation National Register will identify people with a confirmed diagnosis of invasive breast cancer, DCIS, LCIS, Paget's disease, breast Sarcoma, and borderline or malignant Phyllodes tumours as possible cases for inclusion into Te Rēhita Mate Ūtaetae.

The following eligibility criteria must be met:

A new diagnosis of breast cancer in Aotearoa New Zealand, taking into consideration the inception dates of the regional registers.

• A new diagnosis of breast cancer in Aotearoa New Zealand, taking into consideration the inception dates of the regional registers.
  
  • Northland - 1 January 2020
  • Auckland - 1 June 2000
  • Bay of Plenty DHB - 1 January 2020
  • Tairāwhiti - 1 January 2020
  • Hawke's Bay - 1 January 2020
  • Waikato - 1 January 1991
  • Lakes DHB - 1 January 2020
  • Taranaki DHB - 1 January 2020
  • Whanganui DHB - 1 January 2020
  • MidCentral DHB - 1 January 2020
  • Wellington - 1 January 2010
  • Christchurch and West Coast - 15 June 2009
  • South Canterbury - 1 January 2020
• As of January 2017, any patient with a previous history of breast cancer before the applicable dates, diagnosed with a new breast primary in the contralateral breast or in the same breast, but of a different morphology, is also eligible. Previous history includes invasive, ductal carcinoma in situ (DCIS) or pleomorphic lobular carcinoma in situ (PLCIS).
• Patients with a previous diagnosis of lobular carcinoma in situ (LCIS) are eligible for Te Rēhita Mate Ūtaetae.
• The patient normally resides within the District Health Board (DHB) catchment area(s) of the region at the time of their diagnosis.
• The patient is not already on Te Rēhita Mate Ūtaetae.
• The patient has not informed any data manager of their wish to opt out of Te Rēhita Mate Ūtaetae.
• Patients who meet the above criteria and are diagnosed at death or time of autopsy shall also be included.