Accessing the National Cancer Data Repository

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 Clinical Practice Research Datalink (CPRD). Whichever route is taken, it is advisable to contact the lead cancer registries for the tumour site(s) to be investigated at an early stage for advice on data availability, completeness and interpretation.

NCIN has worked with the United Kingdom Association of Cancer Registries (UKACR) and other data owners to agree access mechanisms for these data and an overarching access policy. To ensure that patient confidentiality is protected, all releases of data will be made in line with existing UKACR policies. Cancer registries or the NCIN co-ordinating team are able to advise on these requirements when study proposals are discussed.

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).

Applications for information from the National Cancer Data Repository

Applications for data from the NCDR that will not make use of the linkage to GPRD should be directed 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 (the UKACR provides a registry finder tool to identify the appropriate registry), although the application may be passed to another cancer registry based on expertise and workload.

Applications for CPRD linked data

Applications for CPRD linked data are handled by CPRD, and the relevant process is described on their website. CPRD will pass applications that require cancer registration data to NCIN for review by a subgroup of the NCIN Steering Group (see terms of reference).

We recommend that potential users of this linkage contact the the lead cancer registry for the tumour site concerned before making their application to CPRD to discusss their study and ensure that the required data are available.

Launch of CPRD

From April 1st 2012, the Clinical Practice Research Datalink (CPRD) will provide access to a single, centralised ‘cradle-to-grave’ source of patient level data. Spanning the 52 million English NHS population, CPRD will offer unequalled levels of information about the patient pathway and create opportunities for uses of anonymised data sets down to GP practice level, whilst ensuring robust protection for individual patients' confidentiality and privacy. The new service will be created by merging and enhancing the capability of two existing databases:

• Health Research Support Service, which helps researchers to access and analyse a wide range of health-care and other relevant information to support their research projects.
• The GPRD (General Practice Research Database), which is the world’s largest computerised database of anonymised longitudinal medical records from primary care that is linked with other healthcare data.

CPRD will provide a full research service including enabling Primary Care clinical trials via an integrated eCRF-EHR system.