Data requests

We welcome requests from researchers and clinicians for de-identified data.

Data requests for research and audit purposes, are used to improve the care and outcomes for patients with breast cancer in New Zealand.

Requesting data from the National Register

Researchers and clinicians can request data from the National Register, by completing the data request form below. To ensure patient privacy and confidentiality, the National Register will only release de-identified data for research purposes. A secure de-identified pathway will be used when National Register data is linked with other datasets. For patient enquiries, click here.

  • Information on the National Register
  • Data request process
  • Funding for research
  • Patient eligibility criteria
  • What type of information is on the National Register?

    The National Register collects information on

    • Demographics
    • Diagnosis
    • Surgery
    • Follow-up
    • Faster cancer treatment
    • Risk and additional factors
    • Histology
    • Therapies
    • Advanced breast cancer

    You can learn more about this information here.

    The process

    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.

      Download 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 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 This information may only be used internally by the patient carer’s institution and may not be published.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.

    How does the Clinical Advisory Group (CAG) assess a data request?

    The CAG is responsible for the scientific, ethical and cultural review of all applications for data on the National Register, except for local data requests. The CAG also takes into account:

    • The extent to which it will improve treatment and outcomes
    • Whether it 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.

    What funding is available for research?

    Need funding for your National Register-based research? There are several sources of potential funding for research that uses data from the National Register.

    • Breast Cancer Foundation NZ / Health Research Council Breast Cancer Register Research Partnership: This annual funding round usually offers two grants of up to $200,000 each for research in the National Register.
    • Breast Cancer Foundation NZ Fellowships: Breast Cancer Foundation NZ offers two fellowships a year, one clinical, one scientific. Research using the National Register may qualify as either science or clinical research. Applications usually close in September, with results announced in November.
    • Summer Studentships: Breast Cancer Foundation NZ welcomes applications from universities and DHBs for summer studentships each year. We recommend applying by August-September if possible. Email grants@bcf.org.nz to discuss your application or to submit a one-page proposal.

    You could also consider other sources of funding such as your local medical research foundation (e.g. Auckland Medical Research Foundation, Canterbury Medical Research Foundation), and organisations like Cancer Society and Cancer Research Trust NZ.

    Who is eligible to be included on the National Register?

    The Breast Cancer Foundation National Register will identify female and male patients with a confirmed diagnosis of invasive breast cancer, DCIS or LCIS as possible cases for inclusion into the National Register.

    The following eligibility criteria must be met:

    • A new diagnosis of breast cancer, taking into consideration the inception dates of the regional registers.
      • Northland - 1 January 2020
      • Auckland - 1 June 2000
      • Tairāwhiti - 1 January 2020
      • Waikato - 1 January 1991
      • Wellington - 1 January 2010
      • Christchurch - 15 June 2009
    • 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 the National Register.
    • 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 the National Register.
    • The patient has not informed any data manager of their wish to opt out of the Breast Cancer Foundation National Register.
    • Patients who meet the above criteria and are diagnosed at death or time of autopsy shall also be included.