Public Health Scotland is responsible for the collection of information on Scottish residents when they are diagnosed with malignant (and some benign) tumours.

This is a subset of data for the Brain Health Data Pilot (BHDP)

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https://publichealthscotland.scot/services/data-research-and-innovation-services/electronic-data-research-and-innovation-service-edris/overview/what-is-edris/ , https://www.researchdata.scot/media/gz1lpmk2/scottish-cancer-registry-smr06-variables.pdf

The Brain Health Data Pilot (BHDP) project aims to be a shared database (like a library) of information for scientists studying brain health, especially for diseases like dementia, which affects about 900,000 people in the UK. Its main feature is a huge collection of brain images linked to routinely collected health records, both from NHS Scotland, which will help scientists learn more about dementia and other brain diseases. What is special about this database is that it will get better over time – as scientists use it and add their discoveries, it becomes more valuable. 

This is a subset of the Scottish Cancer Registry (SMR06) dataset for use in the Brain Health Data Pilot (BHDP) project. 

The registry began in 1958 collecting personal, demographic and diagnosis information (such as site, histology, behaviour, histological confirmation and hospital of diagnosis) from cancer patients. In 1997, a new electronic cancer recording system was launched and at this point the registry was extended to include extra information on tumour stage (for breast, cervical and colorectal cancer), tumour grade and treatment information. A wide variety of geographical data is also included in the dataset including Scottish Index of Multiple Deprivation and Carstairs measures, census output area, NHS Board, Electoral Ward and Parliamentary constituency.

HDR UK

National Services Scotland;,;Public Health Scotland

Scottish Incidence date is the date that the cancer in question becomes formally known to NHS 
Scotland. Previously known as ‘date treatment commenced’ and/or ‘Incidence Date’. Can be termed 
“date of diagnosis” 
(A) For patients seen as outpatients and/or day cases and/or inpatients (other than long stay or residential), it is the earliest available date from the following: - Date of first consultation as an outpatient.             - Date of first pathology report confirming diagnosis - Date of admission to hospital.                                
- Date of hospital-initiated treatment 
If none of the above dates apply or can be established, the date of diagnosis (or best estimate) should be used. 
(B)	For long stay or residential patients, or patients receiving care at home, it is the date of diagnosis (or best estimate). 
(C)	For death certificate only cases (when follow-up attempts have been unsuccessful), and for cases first diagnosed at autopsy (unsuspected during life), it is the date of death.

Scottish Incidence Date

DIAGNOSIS DETAILS

This indicates the side or laterality of origin (i.e. left or right) in the case of paired organs.  (e.g. breast, kidney, limb, lung, ovary, testis). Acceptable SIDE is based on the current UKACR table of Laterality. Tumours existing in both sides of a paired organ should be registered twice for Left and Right. The only paired organs to be treated as a single site (bilateral) are tumours of the ovary and Wilms tumour of the kidney or nephroblastoma. (ICDO(3) 8960/3) Options: 
Code 	Description 
0 	Not applicable (non paired organs) 
1 	Right 
2 	Left 
3 	Bilateral 
9 	Not Known 
This field is collected for all registrations with a Scottish incidence date from 1.1.1997.

Side (Laterality)

Converted to ICD-10 code from SNOMED and ICD-9 codes

ICD-10 Conv. Site

Source Data

ICDO(2) - International Classification of Diseases for Oncology (2nd revision). Similar to ICD10 site code, but there are differences in the site code ranges. ICDO(2) does not include type specific codes such as lymphomas (C82-C85) or Kaposi’s sarcoma (C46), but has the ability to code such neoplasms more precisely to their site of origin. All registrations should now be completed with an ICDO(2) site code, regardless of incidence. This field is collected for all registrations with a Scottish incidence date from 1.1.1997.  With the introduction of ICDO(3), it should be noted that there is no change in the codes for SITE from ICDO(2) to ICDO(3).

Tumour Site – ICDO(2) / ICDO(3) Code

ICDO - International Classification of Diseases for Oncology. Tumour type indicates the morphology (histology) of the tumour and comprises the first four digits of the ICD-O morphology code and a fifth digit which denotes behaviour of the tumour.  
All registrations with a Scottish incidence date up to and including 31.12.1996 should be classified according to the ICDO classification.   
5th digit options: 
 
Code 	Description 
0 	Benign 
1 	Uncertain whether benign or malignant   
2 	Carcinoma in situ 
3 	Malignant- primary site 
6 	Malignant- metastatic site or secondary site 
9 	Malignant- uncertain whether primary or metastatic site

Tumour Type - ICDO Code

ICDO(2) - International Classification of Diseases for Oncology (2nd revision). Tumour type indicates the morphology (histology) of the tumour and comprises the first four digits of the ICDO(2) morphology code and a fifth digit which denotes behaviour. All registrations with a Scottish incidence date from 1.1.1997 to 31.12.2005 should now be completed with an ICD(O)2 morphology code. There are some differences between ICDO and ICDO(2) including the change in behaviour of certain tumour types from one classification to the other.

Tumour Type - ICDO(2) Code

ICDO(3) - International Classification of Diseases for Oncology (3rd revision). Tumour type indicates the morphology (histology) of the tumour and comprises the first four digits of the ICDO(3) morphology code and a fifth digit which denotes behaviour. 
5th digit options: 
 
Code 	Description 
0 	Benign 
1 	Uncertain whether benign or malignant 
2 	Carcinoma in situ 
3 	Malignant- primary site 
6 	Malignant- metastatic site or secondary site 
9 	Malignant- uncertain whether primary or metastatic site 
Please note there are some differences between ICDO(2) and  ICDO(3) including the change in behaviour of certain tumour types from one classification to the other. This field will be completed for all registrations with a Scottish incidence date from 1.1.2006. Registrations with a Scottish incidence date from 1.1.2012 onwards, will adopt the 2011 updated version of codes for ICDO3.

Tumour Type - ICDO(3) Code

Indicates the classification system used for grading tumour.  Options: 
 
Code 	Description 
1 	Grading for breast cancer (ICD10 C50 and D05). 
2 	ICD-O/UICC 
3 	Gleason Score (Prostate only – ICD10 C61)   
4 	Bloom and Richardson (Breast only) *NOW OBSOLETE* 
5 	Fuhrman nuclear grade/ISUP (VANCOUVER) (Renal cell carcinomas of kidney – ICD10 C64 
6 	WHO grade (Brain and CNS only -  ICD10 C70-C72, D32 – D33, D35.2 – D35.4, D42 – D43, D44.3 – D44.5 
7 	GIST only C15*, C16*, C17*, C18*, C20*, C25*, C269, C48.1, C762, C80* and morphology 89363 
8 	Other 
9 	Not determined/not stated/not applicable 
 
For code 1 note: 
The Nottingham grading system (previously option 1) and the Bloom and Richardson grading system (previously option 4) have been combined, as one is essentially a modification of the other. The new Grading for breast cancer (option 1) will be used from the introduction in October 2010 of the newly developed Socrates version and should be completed for all cases of breast cancer. Option 4 is now obsolete. All previously registered cases of Bloom and Richardson Grade have been electronically amended to record the new option 1.  
 
For code 5 note: 
Fuhrman nuclear grade was introduced as an option in Socrates in 2006. Previously, this classification was recorded under [8] Other. ISUP (VANCOUVER) was introduced as an option in Socrates in 2014. 
 
For code 6 note: 
This was previously recorded under [8] Other with a note of grade in the Admin screen. To be collected for records from 1.1.2006 Scottish incidence onwards. 
For code 7 note: 
This was introduced for 2016 registrations. 
 For most other cancers, the ICD-O/UICC grading system is used. If the grade of differentiation is explicitly enumerated in the pathology report it should be recorded as such. If it is not explicitly stated, it may be derived from the text of the pathology report according to the definition options stated for Grade below. Grade is recorded every time this information is available except when T or B cell origin is provided for lymphomas & leukaemias. In this event, the T or B - cell origin has priority and also has options stated in Grade definition below.  
 
This field is collected for all registrations with a Scottish incidence date from 1.1.1997.

Grade Classification Used

Grade or cell type indicates the degree of differentiation of malignant tumours or the T-cell & B-cell designation for lymphomas and leukaemias and is sometimes recorded as the sixth digit of the ICDO morphology code, although this is not recorded on SOCRATES. 
 
Breast options:  
Code 	Description 
1 	Grade 1 / low grade   
2 	Grade 2 / intermediate grade   
3 	Grade 3 / high grade   
9 	Not Known 
 
Prostate -‘Gleason Score’ Options: 2 -10 or 0 (Not known).  
Up to Scottish incidence date 31.12. 2010, the Gleason score will be recorded as the sum of the 
Gleason Major score and Gleason Minor score. From 1.1.2011 Scottish incidence date onwards, the Grade or Cell type field will contain the Gleason Major, Minor and Tertiary score separately. Options: 1 - 5 or 9 (Not known).  
To be completed for all prostate cases with an ICD10 code of C61. 

Kidney – ‘Fuhrman’/ISUP (VANCOUVER) Options: 
Code 	Description 
1 	Grade I 
2 	Grade II 
3 	Grade III 
4 	Grade IV 
9 	Not Known 
 
WHO (Brain and CNS) Options:  
Code 	Description 
1 	Grade I 
2 	Grade II 
3 	Grade III 
4 	Grade IV 
9 	Not Known 
 
 
 
 
GIST (sarcoma GIST tumours only) Options: 
Code 	Description 
GX 	Grade cannot be assessed 
G1 	Low grade; mitotic rate 5/50 per high-power field (HPF) or less 
G2 	High grade; mitotic rate > 5/50 HPF 
 
ICD-O/UICC Options:  
	Code 	Description 
	1 	(Well) differentiated   
	2 	Moderately (well) differentiated 
	3 	Poorly differentiated   
	4 	Undifferentiated, anaplastic 
	5 	T-Cell (inc. T-precursor)  
	6 	B-Cell (inc. Pre-B, B-precursor) 
	7 	Null Cell ( Non T-non B, leukaemias only) 
	8 	Natural killer (NK) Cell   
	9 	Grade/Cell type or differentiation not determined, not stated or not applicable. 

To be used for all diagnostic sites other than those above. 
This field is collected for all registrations with a Scottish incidence date from 1.1.1997.

Grade or Cell type

Most Valid Basis of diagnosis indicates the method judged to have best provided or validated the diagnosis during the course of the illness.  Options: 
Code 	Description 
1 	Clinical only 
2 	Clinical investigation (including x-ray, ultrasound, etc.) 
3 	Exploratory surgery/endoscopy/autopsy  (without concurrent or previous histology) 
4 	Specific biochemical and/or immunological tests (e.g. Prostate Specific Antigen (PSA) - for prostate cancer or Bence Jones Protein (BJP) - for Myeloma) 
5 	Cytology (including blood film or bone marrow aspirate) 
6 	Histology of metastasis 
7 	Histology of primary 
8 	Autopsy (with concurrent or previous histology) 
9 	Not Known 
10 	Death certificate only   
 
The methods of diagnosis are listed in essentially ascending order of validity, microscopic methods having greater validity than non-microscopic methods. 
This field is collected for all registrations with a Scottish incidence date from 1.1.1997.

Most Valid Basis of Diagnosis

Histological Verification is microscopic confirmation of the histological or cytological diagnosis (including examination of peripheral blood film). For post-97 registrations, HV-verified should correspond with Most Valid Basis Of Diagnosis options 5-8.  
NOTE - CIN 3 should only be registered if the diagnosis is based on histology, not cytology alone.  Options: 
 
Code 	Description 
1 	Verified 
2 	Not verified
9 	Not Known

Histological 
Verification

Method of first detection indicates how the tumour was first detected. 
 
Options: 
Code 	Description 
1 	Screening examination 
2 	Incidental finding (on examination or at surgery for an unrelated reason) 
3 	Clinical presentation (with relevant symptoms) 
4 	Incidental finding at autopsy (previously unsuspected) 
5 	Interval cancer 
8 	Other 
9 	Not Known 
 
Interval cancer is an option introduced in the redeveloped SOCRATES in 2006. It describes when a primary tumour with histological confirmation is diagnosed in the interval following a negative screening episode and before the next scheduled screening examination.  The "interval" relates to the interval between screenings rather than the interval between separate tumour occurrences. 
 
This field is collected for all registrations with a Scottish incidence date from 1.1.1997.

Method of First Detection

Clinical stage indicates the extent of spread of the tumour at diagnosis in terms of clinical findings.
Stage is associated with invasive tumours only.
T-size/ Extent of Primary tumour based on clinical examination ± imaging, e.g. mammography.

STAGE_CLINICAL_T

STAGE DETAILS

Condition of regional lymph nodes/glands based on clinical examination ± imaging

STAGE_CLINICAL_N

STAGE_CLINICAL_M

Pathological Stage indicates the extent of the spread of the tumour at diagnosis in terms of the pathological findings.
Breast and lung will be collected from incidence 01/01/2005. Renal and prostate will be collected from 01/01/2013
Stage is associated with invasive tumours only.
T-size/ Extent of Primary tumour based on clinical examination ± imaging, e.g. mammography.

STAGE_PATHOLOGIC_T

STAGE_PATHOLOGIC_N

STAGE_PATHOLOGIC_M

Options: 
Code 	Description 
1 	Localised 
2 	Regional spread    
3 	Distant metastasis   
4 	Not Known 
 
This field will be collected for all malignant lung tumours (C34*) registered with a Scottish incidence date from 1.1.2005 to 31.12.2012

Clinical extent of disease

Stage (Colorectal) indicates the extent of spread of the invasive tumour at diagnosis in terms of the pathological and/or clinical findings for Socrates. Extent of Primary tumour for Colorectal cancer - 
Dukes’ staging is primarily based on histological findings.  Dukes’ Staging Classification Options: 
 
Code 	Description 
A 	Tumour limited to muscularis propria (muscle coat), regional lymph nodes negative 
B 	Tumour invades through muscularis propria into serosa/subserosa or through peritoneum but regional lymph nodes negative 
C1 	Regional lymph nodes positive but apical node negative 
C2 	Regional lymph nodes positive, apical lymph node positive 
D 	Distant metastases (e.g. liver) 
9 	Not Known 
Note: Dukes’ stage D was not included in the original Dukes’ classification 
Note:  Regional lymph nodes are the pericolic and perirectal and those located along the ileocolic, right colic, middle colic, left colic, inferior mesenteric and superior rectal (haemorrhoidal) arteries 
This field is collected for all registrations with a Scottish incidence date from 1.1.1997 onwards for all malignant colorectal (ICD10 C18 – C20) and anal (ICD10 C21) tumours.

STAGE_COLORECTAL

FIGO Stage indicates the extent of spread of the invasive primary tumour for Cervix and ovary at diagnosis in terms of the pathological and/or clinical findings.
From 01/01/1997  FIGO stage will be collected for invasive tumours of the cervix. From 01/01/2005 incidence date FIGO stage will also be collected for invasive tumours of the ovary.

STAGE_FIGO_AFTER_SURGERY

FIGO Stage indicates the extent of spread of the invasive primary tumour for Cervix and ovary at diagnosis in terms of the pathological and/or clinical findings. FIGO stage will be collected for all tumours of the cervix and ovary from an incidence date of 01/01/2005.

STAGE_FIGO_BEFORE_SURGERY

Format
Integer

Field Length
1

Priority
Local

Definition
A categorisation which divides the Scottish population into five equal categories based on the range of SIMD scores so that 20% of the population falls into each quintile (population weighted).

Points to note

For SIMD2016
Most Deprived Quintile = 1
Least Deprived Quintile = 5

SIMD Scotland Quintile

The index is an area based measure, calculated at data zone level and has seven domains (income, employment, education, housing, health, crime and geographical access). These have been combined into an overall index. Please note that SIMD values may appear for records prior to 1999, however ISD recommendations are to use SIMD for trend analyses from 1999 onwards. For trend analyses back to 1991, use the 2001 census based Carstairs deprivation.
For trend analyses back to before 1991, use the 1991 census based Carstairs deprivation. See the ISD website for further information.
Please indicate which SIMD version you would like for each selected variable.
 
Note on change in ordering of quintiles and deciles
Following the release of the SIMD 2009, ISD changed their ordering of quintiles and deciles to fit with the method that is used by the Scottish Government
(SG). For SIMD 2009, SIMD 2012 and future releases, the method is now: 1 = MOST deprived, 5 or 10 = LEAST deprived
 
 ISD analyses based on SIMD 2006 or SIMD 2004 will be left in their current format:  1 = LEAST deprived; 5 or 10 = MOST deprived.
To avoid confusion, deprivation categories should always be fully labelled. For example, for SIMD 2012, 'decile 1 (most deprived)'… 'decile 10 (least deprived)'.
For time trend analyses combining SIMD 2004/2006 with SIMD 2009/2012 it is important to treat all deciles and quintiles in the same way. SIMD 2004/2006 deciles/quintiles should be reversed from 1=LEAST deprived, 5 or 10=MOST deprived to 1=MOST deprived, 5 or 10=LEAST deprived in order to keep the same convention for the deciles and quintiles throughout the analysis.

Scottish Index of Multiple Deprivation (SIMD)

BHDP - Scottish Cancer Registry (SMR06)

The index is an area based measure, calculated at data zone level and has seven domains (income, employment, education, housing, health, crime and geographical access). These have been combined into an overall index. Please note that SIMD values may appear for records prior to 1999, however ISD recommendations are to use SIMD for trend analyses from 1999 onwards. For trend analyses back to 1991, use the 2001 census based Carstairs deprivation.
For trend analyses back to before 1991, use the 1991 census based Carstairs deprivation. See the ISD website for further information.
Please indicate which SIMD version you would like for each selected variable.
 
Note on change in ordering of quintiles and deciles
Following the release of the SIMD 2009, ISD changed their ordering of quintiles and deciles to fit with the method that is used by the Scottish Government
(SG). For SIMD 2009, SIMD 2012 and future releases, the method is now: 1 = MOST deprived, 5 or 10 = LEAST deprived
 
 ISD analyses based on SIMD 2006 or SIMD 2004 will be left in their current format:  1 = LEAST deprived; 5 or 10 = MOST deprived.
To avoid confusion, deprivation categories should always be fully labelled. For example, for SIMD 2012, "decile 1 (most deprived)"… "decile 10 (least deprived)".
For time trend analyses combining SIMD 2004/2006 with SIMD 2009/2012 it is important to treat all deciles and quintiles in the same way. SIMD 2004/2006 deciles/quintiles should be reversed from 1=LEAST deprived, 5 or 10=MOST deprived to 1=MOST deprived, 5 or 10=LEAST deprived in order to keep the same convention for the deciles and quintiles throughout the analysis.

BHDP - Scottish Cancer Registry (SMR06)

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