Audit & Research
One of the NCIN core objectives is 'Enabling use of cancer information to support audit and research programmes'. The linked National Cancer Data Repository (NCDR) provides opportunities for novel hypothesis-led studies, as well as the posibility of enhancing other datasets (for example, those collected as part of clinical trials or linked to collections of samples).
The NCDR has been prepared by Thames Cancer Registry and Northern and Yorkshire Cancer Registry and Information Service on behalf of the NCIN. The combined dataset covers the whole of England and contains:
- ONS Minimum Cancer Dataset (1971-2006 / 9.2 million tumours)
- Merged Cancer Registry Dataset (1990-2006 / 5.3 million tumours) containing additional tumour and treatment information
- Inpatient Hospital Episode Statistics Data (1997-2007 / 33 million episodes / 4.9 million patients)
A linkage between the NCDR and the General Practice Research Database (GPRD) also exists and applications for linked data may be made to GPRD. GPRD collects data on over 3.6 million active patients (approximately 13 million total) from around 488 primary care practices throughout the UK. This linkage provides vital information on primary care that is not included in the other available datasets.
The NCDR will be updated on a regular basis to extend the time period and range of information available. In the near future data from the national cancer audits managed by the National Clinical Audit Support Programme will be added and discussions are underway to include further data sources. NCIN has been working with the UK Association of Cancer Registries (UKACR) and other data owners to agree access mechanisms for these data. To ensure that patient confidentiality is protected all releases of data will be made in line with existing UKACR policies.
NCIN is currently seeking pilot studies to test the access mechanisms now in place and to gather feedback on these processes and on the usefulness of the data. To discuss this please contact Michael Chapman in the NCIN co-ordinating team
