Cancer registration is the systematic collection of data about cancer and tumour diagnoses. In England, this data collection is managed by the National Disease Registration Service (NDRS) in NHS Digital. Every year, the NDRS collects information on over 300,000 cases of cancer, including patient details, as well as detailed data about the type of cancer, how advanced it is and the treatment the patient receives.
Data are submitted to the NDRS from a range of healthcare providers and other services (for example, histopathology and haematology services, radiotherapy departments, screening services and general practitioners). The National Cancer Registration and Analysis Service (NCRAS), which is a part of NDRS, then uses these multiple sources to build a comprehensive picture of cancer incidence in England, as well as other detailed analysis and interpretations covering the entire cancer pathway on all patients in England. For more information, please see the Data Resource Profile for NCRAS.
The quality and accuracy of the data are validated and processed to ensure that they are consistent and to a high standard. Once all the expected records for any one incidence year have been received and validated, NCRAS takes a snapshot of the dataset, which provides a single, consistent source of cancer registrations. Cancer incidence for 2019 was created from a snapshot taken in September 2021, for the period January to December 2019. The snapshot will vary year on year due to the dynamic nature of registration data:
- new cancer cases will be registered which can include new “late” registrations after cancer incidence has been published for that year
- cancer records can be amended, for example the site code of a record can be modified when more accurate information becomes available
- cancer records can be cancelled (although this is uncommon)
- A less common reason for changes to historical data is a patient exercising their right to opt-out of the cancer registration datasets.