Accessing Data

There are two main routes to access linked information from the National Cancer Data Repository (NCDR) depending on whether the proposed study will make use of the linkage to the General Practice Research Database. Whichever route is taken, it is advisable to contact the lead cancer registry for the tumour site(s) to be investigated at an early stage for advice on data availability, completeness and interpretation.

All research studies making use of the NCDR must have appropriate ethical and information governance approvals (including support from the Ethics and Confidentiality Committee of the National Information Governance Board under Section 251 of the NHS Act 2006 if confidential patient information will be used without consent). Cancer registries will be able to advise on these requirements when study proposals are discussed.

Applications for information from the National Cancer Data Repository

Applications for data from the NCDR, which includes linked cancer registration and Hospital Episode Statistics (HES) records should be made to the lead cancer registry for the tumour site concerned. Requests covering multiple tumour types should initially be directed to the applicant's local cancer registry, although the application may be passed to another cancer registry based on expertise and workload.

Applications for GPRD linked data

Applications for GPRD linked data are handled by GPRD, and the relevant process is described on their website. GPRD will pass applications that require cancer registration data to NCIN for review. The review is conducted by a subgroup of the NCIN Steering Group whose terms of reference are described here.