National Register

Te Rēhita, the National Register is a rich database of patients who have been diagnosed with invasive breast cancer, DCIS or LCIS in New Zealand, representing all breast cancer patients diagnosed across the country.

Te Rēhita, the National Register holds information on:

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

Data on Te Rēhita, the National Register has been collected since 2000 to use for research and audit purposes, to help improve diagnosis, treatment and outcomes for breast cancer patients. It is used for the following areas:

• Research

- Epidemiology and changing patterns of breast cancer

- Assessing efficacy and treatment of existing and new treatments

- Identifying regional and NZ-specific cancer trends

- Assessing and addressing inequities in care

- Indirectly enabling other research, e.g. clinical context for cancer genome research

• Healthcare planning
• Audits for quality measurement and improvement, e.g. BreastSurgANZ Quality Audit

Patients included on Te Rēhita, the National Register are followed up all their lives, to provide the most complete data possible. If needed, GPs may be contacted by an authorised data manager for annual follow-up data, including breast cancer medications prescribed and any recurrent or new breast cancers. Te Rēhita, the National Register is a confidential database, and only de-identified data is released.

Read more about Te Rēhita, the National Register.

Patients are eligible for inclusion on Te Rēhita, the National Register if they meet the following criteria:

• A new diagnosis of breast cancer, taking into consideration the inception dates of the regional registers.
• Northland: 1 January 2020
• Auckland (Auckland DHB, Waitematā DHB, Counties-Manakau DHB): 1 June 2000
• Bay of Plenty: 1 January 2020
• Tairāwhiti: 1 January 2020
• Hawke’s Bay: 1 January 2020
• Waikato: 1 January 1991
• Lakes District: 1 January 2020
• Taranaki: 1 January 2020
• Whanganui: January 2020
• MidCentral: 1 January 2020
• Wellington: 1 January 2010
• Nelson-Marlborough: 1 January 2020
• Christchurch (Canterbury DHB, West Coast DHB): 15 June 2009
• South Canterbury: 1 January 2020
• Southern: 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, 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 Te Rēhita, the National Register.
• The patient has not informed any data manager of their wish to opt out of Te Rēhita Mate Ūtaetae, 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.

Te Rēhita, the National Register welcomes requests from researchers and clinicians for de-identified data. To request data, a data request form must be submitted, along with chosen data fields. Data requests may be subject to a review by the National Register Clinical Advisory Group (CAG), depending on whether local or national data has been requested. To request data, visit Te Rēhita, the National Register website.

See research published using data from Te Rēhita, the National Register.