Page last updated: 29-MAY-2007

Scottish Cancer Registry

The Scottish Cancer Registry has been collecting information on cancer since 1958.  Approximately 40,000 registrations are made annually in Scotland and the cancer registration database currently holds over 1,200,000 records going back to 1958.

The registry is responsible for the collection of information on all new cases of primary malignant neoplasms, carcinoma in situ (including grade III cervical intra-epithelial neoplasia), neoplasms of uncertain behaviour and (since 1 January 2000) benign brain and spinal cord tumours arising in residents of Scotland.

Data quality is monitored using routine indicators, computer validation and ad hoc studies of data accuracy and completeness of ascertainment.  Data assurance is also achieved through data exchange with specialist tumour registries such as those of the Scottish Melanoma Group and the UK National Register of Childhood Tumours.

Historically, there were five semi-autonomous regional registries that pooled their data with the central Scottish Cancer Registry.  Reorganisation took place in 1997 to form a single cancer registry, managed by ISD, and supported by a team of dedicated ISD staff located in hospitals throughout Scotland. 

For patients diagnosed up to 31 December 1996 a limited data set was collected.  For patients diagnosed from 1st January 1997 onwards, an extended data set, including information on stage, (for breast, colorectal and cervical cancer) and information on treatment was collected for all patients.  Data on ethnicity was also included but is often not available and therefore has always been poorly recorded with over 50% of cases recorded as 'unknown' ethnicity.  The data items collected were in line with the minimum data set at that time for cancer registries in England and Wales.  To coincide with the extended data collection a new online computer system was developed called SOCRATES (Scottish Open Cancer Registration And Tumour Enumeration System).

The SOCRATES system receives notification of cancer from hospital systems, including discharges (SMR01 records), radiotherapy, oncology, haematology and pathology records, prospective audit datasets, deaths from the General Register Office for Scotland and paper records from private hospitals.  There are approximately 800,000 source records processed annually by the SOCRATES system using a complex set of rules and linkage routines to create provisional records.  Once at least six months has elapsed since the date of diagnosis (to allow treatment information to accrue), these records are accessed online by the team of outposted staff who verify the notification, validate the information already held and abstract additional information from hospital medical records and local hospital systems.  

In June 2006, following a period of redevelopment, a new, web based, SOCRATES was launched.  In addition to updating the technology, the new system features include; improved navigation and presentation of information, enhanced validation, new fields to collect pathological staging for breast and lung, clinical staging for lung and FIGO staging for ovary.  The new system functionality will maximise the use of national reference files to derive geographical variables that are required for analysis (for example council area and parliamentary constituency).  Currently the data processing system is being enhanced to improve record linkage and extend the range of source data.


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