Information requests

All requests for data from the NCSP or the NCSP Register must be made in writing to nsu-dataenquiries@health.govt.nz

Applications are to be made using the 'NCSP and NCSP Register - Request for Data' form.

If you are requesting Māori women's data you will need to submit an application to the National Kaitiaki Group (NKG).

The National Kaitiaki Group Application Form can be found on the Kaitiaki Group page

For advice regarding applications for the use of NCSP data please contact nsu-dataenquiries@health.govt.nz

All requests for information from the BSA data set must be made in writing to Maree Pierce, BSA Programme Leader.

Applications are to be made using the 'BreastScreen Aotearoa - Request for Information' form below.

For advice regarding applications for information from the BSA data set please contact: maree.pierce@health.govt.nz

All requests for information from the Antenatal and Newborn Screening Programmes must be made in writing, using the Antenatal and Newborn Request for Information form.

For advice regarding applications for information from the Antenatal and Newborn Screening Programmes, please contact: jasmine.plimmer@health.govt.nz

This information is for individuals or groups proposing to conduct research projects that will or may involve National Screening Unit (NSU) screening programmes or pathways in New Zealand. Its purpose is to clarify the requirements of the NSU in relation to research.

Background

The NSU is keen to support high-quality research projects relevant to screening programmes in New Zealand and to build a cooperative and collaborative relationship with the research community. 

The ethics approval process for research through a variety of ethics committees is well established in New Zealand.

Read the decision and approval processes of the National Health and Disability Ethics Committees website.

Formal “consent to proceed” is not required from the NSU. However research is not conducted in isolation. The Ministry of Health has an overarching responsibility to ensure activities carried out in New Zealand occur within safe standards of practice, and that the integrity of NSU screening programmes and their registers are maintained. This applies to research as well as service work.

Research groups already approach the NSU regarding planned research proposals for a variety of reasons. These can include seeking an opinion about the value of the research, asking for an appraisal of the research protocol, and to seek advice regarding managing the interaction with an established screening programme for individuals who will be screened/treated differently because of participation in a trial.

Please note the NSU is not permitted to endorse research for the purposes of seeking funding or to assist with recruitment of trial participants.

NSU safety standards

Those who choose to participate in screening, do so trusting that health authorities offer high-quality, monitored, safe programmes. All NSU screening programmes operate within established NSU policies and standards, which set out expectations of service providers when screening, diagnosing, managing and/or treating individuals in New Zealand. The Ministry of Health has an obligation to ensure any research-related deviation from established screening programme requirements do not expose women to undue or undeclared clinical risk.

The Ministry of Health identifies the following requirements for the attention of researchers.

1. Research which proposes pathways for trial participants that may mean they are screened, diagnosed, managed or treated outside of NSU policies and standards, must be declared to the NSU prior to commencement of the trial or study.

A copy of the study protocol is likely to be required, and this can be shared with the NSU under a signed confidentiality agreement, if so desired by the research team. Where a trial requires participants to be screened, diagnosed, managed or treated outside of NSU policies and standards, the NSU may seek an assessment of potential clinical risk from an independent expert in the field. Details of participant consent including the wording that will be used to inform potential participants about the deviation from NSU policies and standards inherent in the study, will also be required by the NSU.

The motivation and integrity of researchers in New Zealand are not in question. This requirement to notify aims to limit the possibility that research undertaken in New Zealand could place trial participants at increased clinical risk in a screening programme context.

2. Researchers must declare to the NSU prior to the commencement of the study/trial, any proposal to perform additional screening or diagnostic tests under the research protocol which would not otherwise have been performed.

There are legislative requirements under some screening programmes for specific tests to be recorded on NSU Registers. For example, the NCSP is governed by Part 4A of the Heath Act 1956 under which the programme and researchers have defined obligations.

Researchers who wish to notify or discuss a research proposal are invited to contact the NSU by email at screening@health.govt.nz. Please include the word “research” in the subject line.

When communicating with the NSU regarding a new research project, it would be helpful if researchers could identify if the communication is to:

1. Notify the NSU about the research
2. Ask the NSU for an appraisal of the research protocol or a specific aspect of a study from a screening programme perspective
3. Ask about managing the interaction with an established screening programme for individuals who will be screened/treated differently because of participation in a trial.