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Scottish Cancer Registry

Cancer Metadata

NHS National Services Scotland ISD Scotland & NHS National Services Scotland

Cancer Metadata

Scottish Cancer Registry uses two diagnostic classifications to record cancer:

  • International Classification of Disease (ICD); and the
  • International Classification of Diseases for Oncology (ICD-O)

Medical advances mean these are being constantly reviewed and updated. Scottish Cancer Registry ensures that the data items collected in Scotland are in line with the minimum data set at that time for all cancer registries in the UK and meet the requirements of key performance indicators. A comprehensive list of cancer registration collected variables can be found in the data definitions document below.

Current Metadata

Incidence: Completion data for 2016 incidence is 31st December 2017 in accordance with UKIACR guidelines.

All cancers (excluding benign tumours) - Data collected between 31 December 1958 and 1996: A more limited data set is available for patients diagnosed during the period from 31 December 1996 back to the start of the registry in 1958 (please see SMR06 (historic) attachment below).

All cancers (excluding benign tumours) - Treatment from 1 January 1997: Treatment information is collected for all patients diagnosed with Cancer from 1 January 1997 onwards.

Benign tumours - Information on benign tumours of the brain and spinal cord is collected for all patients from 1 January 2000 onwards. Information on teratoma of the testis is collected from 1 January 2011.

Coding of cancer registrations: We code cancer registrations using the International Statistical Classification of Diseases and Related Health Problems (ICD), and the International Classification of Diseases for Oncology (ICD-O). The timing of use by the SCR of the updated versions of ICD and ICD-O for incidence cases registered is as follows:

  • Up to 31/12/1996: ICD-9 and ICD-O(1) morphology codes. Records prior to this date have been mapped to ICD-9 and ICD-O(1)
  • 1/1/1997 to 31/12/2005: ICD-10, ICD-O(2) site and ICD-O(2) morphology codes
  • From 1/1/2006 to present: ICD-10, ICD-O(2/3) site and ICD-O(3) morphology codes
  • From 1/1/2012 to present: ICD-10, ICD-O(2/3) site and revised ICD-O(3) morphology codes
  • From 1/1/2014 to present: ICD-10.4, ICD-O(2/3) site and revised ICD-O(3) morphology codes

Over time, the three main changes in classification and coding affect bladder tumours, ovarian tumours, and some haematopoietic neoplasms (see individual listing).

Bladder tumours: In line with recommendations of the European Network of Cancer Registries (ENCR) and subsequently the UK Association of Cancer Registries (UKACR), the SCR began coding non-invasive bladder carcinomas as neoplasms of uncertain behaviour or in situ carcinomas (depending on tumour grade). Prior to this, and in accordance with the index of the tenth revision of the International Classification of Diseases (ICD-10), the term 'bladder carcinoma' was coded as invasive disease (ICD-10 C67) unless otherwise specified. The change occurred around the year 2000. It led to an apparent decrease in the incidence of invasive bladder cancer, and a corresponding decrease in survival (due to the reclassification of better prognosis tumours as uncertain or in situ ). For this reason, bladder tumours of all behaviours are combined for the purposes of some analyses, especially for analysis of secular trends.

Haematopoietic neoplasms: The third edition of the International Classification of Diseases for Oncology (ICD-O(3)), adopted by the Scottish Cancer Registry for neoplasms incident from 1/1/2006 onwards, recommends coding myeloproliferative disorders and myelodysplastic syndromes as malignant in line with the WHO Classification of Tumours of Haematopoietic and Lymphoid Tissues. In the second edition of the International Classification of Diseases for Oncology (ICD-O(2)), corresponding to ICD-10, they were coded as neoplasms of uncertain behaviour. However, coding according to ICD-10 remains unaltered until the introduction of ICD10.4 from 1/1/2014.

Ovarian tumours: The second edition of the International Classification of Diseases for Oncology (ICD-O(2)), corresponding to ICD-10, recommended that cystadenomas of borderline behaviour of ovary, in the range M-8440-8490, should be coded as if invasive. ICD-10 and ICD-O(2) were adopted by the SCR for neoplasms incident from 1/1/1997 onwards. Prior to this, according to the first edition of the International Classification of Diseases for Oncology (ICD-O(1)), corresponding to ICD-9, they would have been coded as neoplasms of uncertain behaviour. With the introduction of the third edition of the International Classification of Diseases for Oncology (ICD-O(3)) (for neoplasms incident from 1/1/2006 onwards in Scotland), they reverted to neoplasms of uncertain behaviour, although coding according to ICD-10 remains unaltered.

Transformation Information for haematopoietic neoplasms: In line with recommendations of the European Network of Cancer Registries (ENCR), the SCR began collecting from 1st January 2013 haematopoietic neoplasms that have deemed to have transformed from one malignancy to another. Data available are date of transformation, ICD10 and ICDO3 of transformed malignancy.

Staging: Please see Current Staging document below for 2016 incidence onwards. An archive staging document is also available for previous incidence years.

Latest SMR06 datasetDownload Excel file [34kb]

SMR06 Form (historic)Download PDF file [330kb]

Latest data definitionsDownload PDF file [766kb]

Current Staging Download Excel file [70kb]

Archive Staging Download Excel file [54kb]

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