General / Genetic Requests
The N. Ireland Cancer Registry (NICR) provides data and information for approximately 200 requests each year. In 2018, 99% of genetic requests were completed within the recommended 10 working days and 92% 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.