Scottish Cancer Registry

The Scottish Cancer Registry has been collecting population-based information on cancer since 1958, and now holds details of over 1.8 million records. Details available for each case include personal, demographic and diagnosis information (site, histology, behaviour, histological confirmation, date and hospital of diagnosis). For patients diagnosed since 1997 additional information has been collected including tumour stage (for certain cancers), tumour grade, hospital details, and treatment information (dates and locations of surgery, chemotherapy, radiotherapy and hormone therapy). In 1997 the tumour-based database was converted into a patient-based database.

Potential new cases of cancer are identified from a number of sources including hospital discharge records, radiotherapy, pathology, haematology and oncology databases, cancer screening datasets, community prescribing and death records. Approximately 800,000 source records are processed annually by the Scottish Cancer Registry. The information is linked using probability matching and a provisional cancer registration record is created. Once at least six months have elapsed since the date of diagnosis (to allow any treatment information to accrue), hospital based Cancer Information Officers (CIOs) use the electronic source data on the registration system along with local hospital systems, case notes and primary care records, to determine if the provisional registration should be confirmed.

Over 30,000 new diagnoses of malignant disease are entered onto cancer registry database each year, excluding records for non-melanoma skin cancer (of which there are over 10,000 cases recorded each year - more details on why non-melanoma skin cancer is generally excluded from cancer statistics can be found on the PHS website). In total, around 55,000 new diagnoses of all tumours (including in situ, benign, uncertain behaviour) are recorded annually. Further details of the dataset are available on the Scottish Cancer Registry page of the PHS website and cancer statistics are also available from the PHS website.

Quality and timeliness are monitored annually by the United Kingdom and Ireland Association of Cancer Registries (UKIACR).  Studies of the data quality suggest this is very good, both in terms of accuracy and completeness of ascertainment.

National Services Scotland (NSS) and the Innovative Healthcare Delivery Programme (IHDP) are collaborating to modernise the Scottish Cancer Registry and create the Scottish Cancer Registry and Intelligence Service (SCRIS). More information about SCRIS developments can be found on the PHS website.