General and Genetic Requests

The NICR provided data and information for 132 requests in 2024, 28 (21%) general requests and 104 (79%) genetic requests (excluding local genetic requests).

In 2024, 100% of general requests for information were completed within the target 20 working days and 100% of genetic requests for information were completed within the target 10 working days.

There are two different types of requests that can be made:

General Requests

Data release forms for general requests are available from the Registry by contacting the Office Administrator via email.

Requests which are received by the Cancer Registry may be reviewed by our Research Advisory Group as part of the NICR Council, download an up-to-date list of the members here.

The Northern Ireland Cancer Registry operates a Research Access and Cost Recovery Policy – for the most up-to-date version click this link.

Genetic Requests

A Cancer Genetics Service Nurse extracts data for Northern Ireland referrals only (approximately 80% of total) from the NICR database and is responsible for meeting targets regarding turnaround time for Northern Ireland requests. 

Requests are covered by informed consent for living patients.  The number of requests is expected to rise as new therapies based on familial cancer risks are developed.

Information required for this service will be released to appropriate medical practitioners in line with the policy of the United Kingdom & Ireland Association of Cancer Registries (UKIACR) i.e. information on deceased patients is provided on request while information on live patients is provided with evidence of written consent. 

PLEASE COMPLETE AND RETURN THE GENETIC CONSELLING 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. WE ONLY ACCEPT REQUESTS VIA POST AT THE ADDRESS BELOW.

Please note: This service is primarily for clinicians or medical practitioners.  If you are a patient and wish to find out more, please get in touch using the contact details below.

Currently, for all new research projects or data requesters must complete a “NICR Data Enquiry Form” attached. Once you have decided what data you need, please submit a formal request. To do this you need to complete 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”.

As part of NICR’s Council the Research Advisory Group may review submitted applications for scientific quality and feasibility.  To download a list of the members of the Research Advisory Group click here.

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.  Most responses to requests will be undertaken within 10 working days of submission but complex requests may incur additional costs and timelines. It is not acceptable to request or expect data immediately as this puts undue pressure on the NICR staff and resources.

If you are working in the Amber area (External Researchers) all outputs must be reviewed by an allocated member of NICR staff.  NICR seek to approve outputs within 10-working-days.

All applications for new projects/datasets or dataset modifications, booking of hot desks, and requests for data, analytical support or review/clearance of outputs must be submitted through the NICR e-mail (nicr@qub.ac.uk) 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. 

We appreciate your understanding in this regard and ask you to think carefully about timelines when requesting data.