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Confidentiality & Governance


The Registry requires information on the names and addresses of patients to prevent multiple registrations of the same patient, to calculate survival by linking with data on deaths, to allow follow up for treatments and other care and to facilitate the clinical genetics service. The Registry is independent of all other agencies and must take responsibility to protect the confidentiality of patient data.

The Registry is registered under Queen’s University Belfast in accordance with the 1998 Data Protection Act, (ICO registration no: Z6833827 and its databases have been registered with the Northern Ireland Ethics Committees (ORECNI Reference 10/NIR02/53).  All confidential information within the Registry is encoded, protected by security systems and destroyed when no longer needed. No publication of results will enable any individual to be identified.

A document detailing confidentiality and rules for the issue of data is also available here.


The Registry has a Steering Group that meets three  to five times each year.  In addition, The Registry Council meets twice yearly and it also provides a facility to liaise with key stakeholders and "to pursue the aims of the Registry and to identify and enhance opportunities for use of the Registry data". Membership of these groups is listed below.

Steering Group members
Council Members