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 Data Protection Act, and its databases have been approved by the Office for Research Ethics Committees in Northern Ireland.
Protection of patient information is a priority within the Registry and strict confidentiality rules are applied to prevent identification of individual patient detail. No publication of results will enable any individual to be identified. All confidential information within the Registry is encoded, protected by security systems and destroyed when no longer needed.
The NICR has a Privacy Notice that details why we collect personal information, what we do with it, and how we look after it. A copy of the Privacy Notice can be downloaded by clicking 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