Established in 1976, the Auckland Breast Cancer Study Group (ABCSG) consists of a multi-disciplinary team of clinicians with a particular interest in breast cancer and research. The membership includes representatives from the subspecialties of surgery, pathology, radiology, radiation oncology and medical oncology, consumers and allied health professionals including breast physicians and breast care nurses. For nearly 40 years, the Study Group has worked with international organisations on a number of clinical trials spanning both early and advanced breast cancer.
In the Auckland region between 1976 and 1985 the ABCSG established a comprehensive computerised breast cancer database. Information on 2700 cases of breast cancer provided the resource for some 30 publications. The Register, however, was discontinued in 1985 for various reasons.
In 1996 ABCSG members agreed that a new breast cancer registry should be established initially in the Auckland region and ultimately nationally. Against a background of important developments in a number of areas in breast cancer (including advances in genetics, screening and detection, surgery, radiation therapy and systemic therapy) there was a need for a new, comprehensive database to provide a resource for ongoing audit and research. The Auckland Breast Cancer Register (ABCR) was established on the 1st June 2000. Ethics Approval was obtained from the Auckland Ethics Committee.
In June 2013, the Charities Commission approved the ABCSG application for registration as a charitable entity. The governance of the Register is under the BCF Breast Register Trust. The finalisation of the Trust, its members and TOR are currently underway.
Recording complete information on diagnosis and treatment.
Describing risk factors and prognostic variables.
Assessing survival rates.
Assessing patterns of care and aspects of multidisciplinary management.
Reviewing outcomes of defined patient groups compared with predicted outcomes.
Comparing patient outcomes within and outside trials to assist in directing further research.
Its objective is to provide data that will assist health care providers and planners formulate clinical basis for improvement in the diagnosis and treatment of patients with breast cancer, and be able to evaluate local patterns of care and outcomes that can be compared with national and international standards.
The project has received Ethics Committee Approval and has been declared a Quality Assurance Activity under Part VI of the Medical Practitioners Act 1995.
The ABCR covers the Waitemata, Auckland and Counties Manukau District Health Boards. Together with the three other regional breast cancer registers (Waikato:(external link) which covers the Waikato DHB, Wellington: Wairarapa, Capital & Coast, Hutt Valley DHBs, and Christchurch: Canterbury DHB), approximately 63% of all New Zealand breast cancer registrations (around 1600 per annum) are collected.
Breast Cancer Foundation(external link) New Zealand has funded a project to consolidate the regional registers into a single, modern, web-based platform that will add significant value towards future-proofing these valuable datasets. The new platform has made it easier for data to be made available to clinicians for clinical decision-making and review of outcomes, standards of treatment, scientific research and audits. The ultimate vision of collecting these data is to drive improvements in our treatment and care of breast cancer in New Zealand. The consolidation is now complete with all the data stored on one common platform at Ministry of Health alongside similar clinical registries. Patient data will remain confidential and coded to ensure details are not identifiable. The partnership has been a collaboration between the Breast Cancer Foundation New Zealand, Ministry of Health and the National Health Information Technology Board.
A patient information sheet or brochure is given to the patients on their First Specialist Assessment (FSA) after confirmation of cancer which states the breast cancer facts in New Zealand and about the New Zealand breast cancer register. It also states that all patients will be automatically registered to the breast cancer register unless they opt out by contacting the register staff.
The Auckland Breast Cancer Study Group gratefully acknowledges the funding of the Register by Breast Cancer Foundation New Zealand and the administrative support of the Auckland District Health Board.