General / Genetic Requests
The N. Ireland Cancer Registry (NICR) provides data and information for approximately 180 requests each year. In 2019, 100% of genetic requests were completed within the recommended 10 working days and 100% of general requests for information were completed within the recommended 20 working days.
There are two different types of request that can be made:
Requests are now more complex, clinicians and their managers are requesting the registry to facilitate analysis of patient outcome by clinician or clinician group, with many requiring additional analysis from biostatisticians. Requests which are received by the Cancer Registry will be reviewed by our Research Advisory Group, download an up-to-date list of the members here.
Data release forms for general requests are available from the Registry by contacting the Office Administrator via email.
The N.Ireland Cancer Registry now operates an Research Access Policy and Cost Recovery for the most up-to-date version click this link.
A Cancer Genetics Service Nurse extracts data for Northern Ireland referrals only (approximately 80% of total) from the NICR database and is responsible for targets regarding requests turnaround time for Northern Ireland requests. This arrangement was commended in the peer review of the Registry.
This service is covered by informed consent for living patients. The number of requests for this type of information is expected to rise as new therapies based on familial cancer risks are developed.
Information required for this service will be released to the appropriate medical practitioner in line with the policy of the United Kingdom & Ireland Association of Cancer Registries (UKIACR) ie information on deceased patients is provided on request while information on live patients is provided only with evidence of written consent.
Please complete and return the Genetic Counselling data release form found within the NICR Policy Regarding Security, Confidentiality and Issue of Data (Appendix G, Form V). Genetic requests containing confidential data should not be emailed to the Office Administrator via the NICR email address. All genetic requests containing confidential data should be emailed to the Registry via the secure HSCNI email service.
Please note: This service is primarily for clinicians or medical practitioners. If you are a patient and wish to find out more, then do not hesitate to get in touch using the contact details below.
On behalf of the Northern Ireland Cancer Registry I would like to inform you of some changes that are being put in place. This is due to the increasing demand on registry staff and will ensure that all your research needs will be met within a timely fashion. Please ensure that you read this email carefully.
Currently, for all new research projects or data requests must complete a “NICR Data Enquiry Form” attached. Once you have decided what data you need please submit a formal request.
To action this you need to complete the Data Release Forms I to V (available by contacting the NICR). Please note that there is a fee for most services – details of this can be found in the “Administrative Fee Recovery Policy for the NICR.
The NICR has established a Research Advisory Group who will review submitted applications for scientific quality and feasibility. To download a list of the members of the Research Advisory Group click here. Please note that we aim to complete all reviews within 20 days of submission.
For those who have existing projects with NICR any new data items required or additional work needed by NICR will have to be submitted through the same process above i.e. completion of a NICR Data Enquiry Form. Responses to all requests will be undertaken within 10 days of submission but please note that complex requests may incur additional costs and timelines which will be provided to enable you to plan your research. It is not acceptable to request data immediately as this puts undue pressure on the NICR staff and resources.
If you are working in the Amber areas and would like to take outputs with you these must be reviewed by an allocated member of NICR staff. Currently given the number of data requests the NICR are implementing an improved max 10-day turnaround time (previously 20 days) [this isn’t correct – there previously was no turnaround time – researchers were frequently putting us under pressure for same day turn around, hence the introduction of a 10-day turn around] on output clearance and any analytical queries researchers may have.
All applications for new projects or data set modifications, booking of hot desks, and requests for data, analytical support or clearance of outputs must be submitted through the NICR e-mail (email@example.com) address for the purposes of auditing and staff workload management. To ensure the request is dealt with promptly please use the subject heading “NICR Research Facility”. Your request will then be forwarded to the appropriate member of staff.
Please remember that confidentiality is of high importance when using NICR data.
Once these new measures are all in place it will mean that it will be much easier for you to conduct your research project. We appreciate your understanding in this regard and ask you to think carefully about these timelines when requesting data.