Breast cancer registers

Since 2000, as part of Breast Cancer Foundation NZ’s ‘Research for Life ‘ Programme, The Foundation has provided significant funding – over $2.5 million – to the development and on-going management of four New Zealand regional Breast Cancer Patient Registers: Auckland, Waikato, Christchurch and Wellington.

The four regional registers began collecting data:

• Auckland – 1 June 2000
• Waikato – 1 January 2005
• Christchurch – 15 June 2009
• Wellington – 1 January 2010

The Breast Cancer Patient Registers (Auckland: which covers Waitemata, Auckland and Counties Manukau DHBs , Waikato, Wellington: Wairarapa, Capital & Coast, Hutt Valley DHBs, and Christchurch: Canterbury District Health Board), collect approximately 63% of all New Zealand breast cancer registrations (around 1600 per annum).

BCFNZ is leading and funding 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 will make 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.

Dendrite Clinical Systems Ltd. (United Kingdom), was selected to develop the IT platform which will be securely stored at the Ministry of Health IT platform alongside similar clinical registries. Patient data will remain confidential and coded to ensure details are not identifiable. The partnership has been a collaboration between BCFNZ, Ministry of Health and the National Health IT Board.

For more information on the NZBCR including the Participant Information Sheet (Patient Brochure) please contact the regional data manager for your area (details below) or contact BCFNZ at 0800 BCNurse.

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.

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 NZ breast cancer patients”.

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. .

90-95% of patients consent to their details being included in a 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).

Auckland Breast Cancer Register:

For detailed information and analysis of the data collected to date, click on the links below:

• Auckland Breast Cancer Register Main Poster 2000 – 2012 data
• Auckland Breast Cancer Register – 2000 – 2012 Age data
• Auckland Breast Cancer Register – 2000 – 2012 Ethnicity data
• Auckland Breast Cancer Register – 2000 – 2012 In Situ data
• Auckland Breast Cancer Register – 2000 – 2012 Presentation and Detection data
• Auckland Breast Cancer Register – 2000 – 2012 Survival data

Waikato Breast Cancer Register:

For detailed information and analysis of the data collected to date, click on the links below:

• Breast Cancer Features of Waikato Women Poster 2005-2008 data
• Breast Cancer Treatments for Waikato Women Poster 2005-2008 data
• Waikato Breast Cancer Register Presentation 2005-2008 data

Auckland

Troydyn Raturaga, Lead Data Manager
Auckland Breast Cancer Study Group

Physical Address:
Building 4, Level 6, Rm 64-166
Greenlane Clinical Centre

Postal Address:
Private Bag 92189
Auckland 1142

Email: troydynr@adhb.govt.nz
Ph: (09) 630 9943 Ext 26730
Fax: (09) 631 0730

Waikato

Rachel Shirley | Breast Cancer Register Co-ordinator
Waikato Breast Cancer Research Trust

Pysical Address:
Hockin Building
Waikato Hospital Campus

Postal Address:
Private Bag 3200 Hamilton 3240 NZ

Email: rachel.shirley@waikatodhb.health.nz
Ph: (07) 839 8726 Ext 97503
Fax: (07) 834 3657

Christchurch

Val Davey, Coordinator
Christchurch Breast Cancer Patient Register

Physical Address:
Dept of General Surgery
Christchurch Hospital
245 Antigua Street

Postal Address:
Private Bag 4710
Christchurch 8140

Email: valerie.davey@cdhb.govt.nz
Ph: (03) 378 6389

Wellington

Kelley Barrett, Data Manager
Wellington Regional Breast Cancer Study Group

Pysical Address:
Wellington Hospital
Clinical Trials Unit
Level 8
Ward Support Block

Email: kelley.barrett@ccdhb.org.nz
Ph: (04) 918 5114