Data sources
NCRI obtains its data from a number of sources. The majority of notifications to NCRI come from histopathology laboratories. The remainder comes from sources such as the Hospital In-Patient Enquiry (HIPE) system, death certificates and radiotherapy.
Between 85% and 90% of all new tumour registrations are registered electronically from pathology reports shortly after the patient’s diagnosis. Other electronic data sources such as HIPE, radiotherapy and death certificates may also create a small number of new tumour registrations. The Electronic Cancer Data Registrar (eCDR) reviews the report to ensure tumour coding and pathological staging accuracy. Where CRS fields are not electronically populated, the eCDR manually enters data such as tumour grade . If there are any additional tumours confirmed by pathology, the eCDR creates those records.
After a period of time to allow the patient’s treatment to have taken place, the eCDR reviews the patient’s medical record for additional information. This is usually performed through ‘read-only’ remote or onsite access to hospital data systems. The eCDR collects information such as clinical staging, chemotherapy and hormone therapy. If any data is not available digitally, the eCDR requests access to the patient’s hardcopy chart where it exists.
The eCDR also checks notifications from other sources, such as HIPE, radiotherapy, or death certificate reports. This review can lead to creating additional tumours or adding information to the original tumour.
Finally, before closing the tumour registration on the CRS, the eCDR reviews and validates all fields. The most accurate information available at the time of tumour closure is recorded. This may be further updated should more information become available.