FAQs
What is Te Rēhita Mate Ūtaetae - Breast Cancer Foundation National Register?
Te Rēhita Mate Utaetae - Breast Cancer Foundation National Register is a confidential computerised database that follows patients in New Zealand who are diagnosed with breast cancer. Te Rēhita Mate Utaetae includes detailed information on the patient’s diagnosis, treatment and outcomes.
Who is included inTe Rēhita Mate Utaetae - Breast Cancer Foundation National Register?
Patients with a new diagnosis of invasive breast cancer and DCIS (ductal carcinoma in situ – a pre-invasive cancer) have been included since the inception dates of Te Rēhita Mate Utaetae. See the eligibility criteria for patients here.
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. Māori women are almost 50% more likely to die from their cancer than non-Māori 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?
Data from Te Rēhita Mate Utaetae - Breast Cancer Foundation National Register has been used for research like clinical studies and data analysis, which has led to a steady improvement in breast cancer management. For example, the information tells us how well patients do on different treatments and what treatments are most successful. Audit and analysis of Te Rēhita Mate Utaetae data has allowed us to identify inequalities in patient care and outcomes. We are now working to ensure that all breast cancer patients, regardless of ethnicity or geographic location, will receive the same high standard of care and advances in treatment.
How long hasTe Rēhita Mate Utaetae - Breast Cancer Foundation National Register been operating?
Te Rēhita Mate Utaetae - Breast Cancer Foundation National Register started collecting patient data in 2000. It originally operated as four separate regional registers, which were consolidated into one national register in 2017. For more information see history.
How is the data collected?
The data is collected directly from hospitals, national collections and healthcare professionals by authorised data managers. Participation is voluntary and patients have the right to opt out, however more than 99% of patients currently choose to be involved. Each year data managers contact the patient’s GP for follow-up data to monitor how patient following their breast cancer diagnosis.
How do I know my information is stored securely?
Te Rēhita Mate Utaetae - Breast Cancer Foundation National Register operates in compliance with The Privacy Act 2020 and has Health and Disability Ethics Committee (HDEC) approval. It is stored securely on the Ministry of Health IT platform with other similar clinical registers. Data is key-coded or uploaded by authorised Te Rēhita Mate Utaetae data managers only, who are bound by their employment contract to maintain confidentiality. Requests for data are subject to an ethics approval process. Both released data and data reported in presentations and publications are always de-identified - that is, no information by which a patient can be identified will be released or published.
Who can request data?
Clinicians and scientific researchers can request data here. All applications for Te Rēhita Mate Utaetae - Breast Cancer Foundation National Register data that require individual ethical approval, data linkage, are multi-regional or national, or are for non-audit purposes are reviewed by the Clinical Advisory Group (CAG) for Te Rēhita Mate Ūtaetae. Only de-identified data is released following approval from the CAG.
Patients have the right to request access their own patient information or request that the information held about them be corrected. All information held in Te Rēhita Mate Utaetae - Breast Cancer Foundation National Register is collected from other sources e.g. your GP, hospital and other health care professionals. Patients can request the original source information by contacting their GP, hospital or health care professional. Patients can also contact Te Rēhita Mate Utaetae on 0800 005 849 or admin@breastcancerregister.org.nz to request access to their patient information held on Te Rēhita Mate Utaetae. In this case your record details will be provided to you via your GP or other nominated breast cancer specialist within 10 working days.