For patients – how you can help

We need your help to improve care and outcomes for breast cancer patients.

The Breast Cancer Foundation National Register collects information on breast cancer patients in New Zealand to help improve care and outcomes for all.

Download our patient information brochure

Breast cancer in New Zealand

  • Breast cancer is the most common cancer in women, with one in nine women diagnosed in their lifetime and more than 3,000 diagnosed each year.
  • Breast cancer in men is less common, with about 25 men diagnosed each year.
  • Breast cancer survival rates are among the highest of all cancers, thanks to scientific advances and ever-improving standards of treatment and care. Data from the National Register has shown that our breast cancer survival rates are 87% for five years and 80% for 10 years.
Breast cancer-specific survival rates 5 year 10 year
Auckland region (n = 8809) 87% 80%

Source: The National Register Auckland regional data and Auckland Breast Cancer Study Group (2012). Data from other regions will be reported in the future, when enough data has been collected over a similar period of time.

The National Register contains patient data going back to 2000. Breast cancer patient data on the National Register has been used for clinical studies, data analysis and audits. Research conducted from the National Register has led to a steady improvement in breast cancer management.

What can I do to help?

We're asking you to allow your information to be included in the National Register for the ongoing review of standards of care and research. This includes seeking information from your GP about annual follow-up data, including breast cancer medications prescribed and any recurrent or new breast cancers. The more complete the data, the greater the value of the National Register for improving treatment and care in the future.

How do I get on the National Register?

The data is collected automatically from hospitals and healthcare professionals, so there's no need for you to do anything. This data is kept strictly confidential. Participation is voluntary, and you do have the right to opt out, though less than 1% of patients on the National Register choose to do so. You can find out more about opting out here.

Am I eligible?

If you have a new diagnosis of invasive breast cancer, DCIS (ductal carcinoma in situ – a pre-invasive cancer) or LCIS (lobular carcinoma in situ), and you are in the Auckland, Waikato, Wellington or Christchurch regions then you are eligible. For a full list of eligibility criteria click here.

How do I access my information?

The National Register data is collected from your GP, hospital and other healthcare professionals. At any time you may request your patient information, or request that the original source information be corrected by contacting your GP, hospital or healthcare professional. You can also contact the National Register on 0800 005 849 or email admin@breastcancerregister.org.nz to request your information. Your record details will then be provided to you via your GP or other nominated breast cancer specialist within 10 working days.

Patient confidentiality

The National Register follows strict protocols for collecting, storing and using data for research and audit purposes. Patient data is stored securely, will remain confidential at all times and is coded to ensure that patient details are not identifiable. There will be occasions when a third party needs to accurately match records, e.g. to take part in a BreastSurgANZ quality audit, or a researcher who is studying treatment and patient outcomes. For these data requests, identified data is coded, matched to records, stored securely and destroyed after use.

To ensure patient confidentiality:

  • Data is key-coded or uploaded by authorised data managers only who are bound by their employment contract to maintain confidentiality, and
  • Reported data in presentations and publications are always de-identified. That means that no information by which a patient can be identified will be released or published.
  • The National Register is stored securely on the Ministry of Health IT platform with other similar clinical registers
  • The National Register complies with the Privacy Act 1993 and has Ethics Committee Approval

Patient rights

You can request a copy of your care management data at any time from your breast specialist or GP. This is the primary source for the National Register data.

If you have further concerns regarding your rights as a participant in this register, you can contact an independent Health and Disability Advocate. This is a free service provided under the Health and Disability Commissioner Act.

What if I want to opt-out?

If at any time you do not wish to be included in the National Register or you would like any further information about the Breast Cancer Foundation National Register, you can contact us.

Email us at admin@breastcancerregister.org.nz

Call at 0800 005 849

Write to us at:

Free Post 104 Breast Cancer Foundation National Register
Private Bag 92189 Breast Clinic,
Level 6, Building 4, Greenlane Clinic Centre,

Auckland 1142

Want to donate?

The National Register operates as a not-for-profit charitable trust funded by Breast Cancer Foundation NZ (BCFNZ). BCFNZ has committed to fund the National Register until 2024. You can help keep the National Register going by donating here.

Visit the BCFNZ website

Download a file

You can find out more by downloading our patient information brochure.

Download our Patient Information Brochure