The Breast Cancer Foundation National Register allows researchers and health professionals to have access to a wealth of data, so that they can improve treatments in New Zealand.
The National Register holds a rich database of patients who have been diagnosed with breast cancer since 2000. Approximately 3,300 new patient registrations are added each year.
Breast Cancer Foundation NZ has been collecting data from the five New Zealand regional Breast Cancer Patient Registers in Northland, Auckland, Waikato, Wellington and Christchurch since 2000. In 2020, the decision was made to expand the National Register to cover the entirety of New Zealand, and this goal was achieved in early 2021.
The National Register collects information such as demographics, diagnosis, follow-up and treatments. Researchers and clinicians can request de-identified data from the National Register for research and audit purposes.
The Foundation has provided significant funding – over $2.5 million – to the development and management of regional registers as part of Breast Cancer Foundation NZ’s ‘Research for Life ‘ Programme. BCFNZ has also committed $5 million for the lifetime of the National Register.
Why does New Zealand need a national breast cancer patient register?
New Zealand needs a national breast cancer patient register because breast cancer is a significant health issue for New Zealand women. It is the leading cause of cancer deaths for women. Maori women are almost 50% more likely to die from their cancer than non-Maori and all New Zealand women have a higher death rate from breast cancer when compared to other countries such as Canada, the United States and Australia. Alarmingly, New Zealand’s breast cancer death rate is 20% higher than Australia’s.
What is the purpose of a breast cancer register?
A breast cancer register allows us to have a greater understanding of the nature of breast cancer and its treatment in New Zealand. It records detailed information about diagnosis, treatment and outcomes of patients with breast cancer within New Zealand. For example, the information tells us how well patients do on different treatments and what treatments are most successful. As Gavin Harris, a specalist pathologist in Christchurch highlights, “breast cancer registers help to improve the management and treatment of current and future New Zealand breast cancer patients”.
How do we do this?
The current regional registers are computerised databases where the information is entered and stored in a confidential manner. Each group has governance controlling the use and release of information.
Both public and private sector breast cancer patients are eligible to participate in the regional registers; however, participation is voluntary and participants do have the right to opt out of the register if they wish.
More than 99% of patients consent to their details being included the National Register. Participants are followed up each year to monitor how they are doing following their breast cancer diagnosis. All registers include patients with invasive breast cancer and DCIS (ductal carcinoma in situ – a pre-invasive cancer).
What is information in the National Register used for?
Information on the National Register is used for:
- Research, such as identifying breast cancer trends, assessing new and existing treatments and addressing inequities in care
- Healthcare planning
- Audits for quality measurement and improvement
The Breast Cancer Foundation National Register also houses research that uses data from the register, such as the poster below:
What information can I find on the National Register website?
The Breast Cancer Foundation National Register website has information for researchers and patients, as well as information on its governing bodies. Researchers and clinicians can request data from the National Register through the website, and it also holds published research utilising data from the National Register, which is available to download.