BCF National Register

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

(70% of registrations, Breast Cancer Foundation National Register 2012)

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

The National Register welcomes requests from researchers and clinicians for de-identified data. To request data, you must complete a data request form, select your data fields and submit it to the National Register. Depending on whether you have requested local or national data, your data request may be subject to a review by the National Register Clinical Advisory Group (CAG).