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Cancer Registration Dataset Cancer Registration Dataset (from Cancer Dataset Version 4.0) This is an extract of the National Cancer Dataset, showing the data items required for the Cancer Registration Dataset. 1 1.1 1.2 Data Item Description Demographics It is anticipated that some of the demographic data items listed below will be collected by every provider with which the patient has contact. NHS NUMBER [NHS Number] LOCAL PATIENT IDENTIFIER [Hospital Number] Version 4.0 Issue Date: 11.08.03 Where this information is exchanged, the appropriate data item name should be used to identify the particular instance of the data (See Description column). The patient’s unique 10 digit new format NHS Number The local number by which the patient is known at this hospital. This may be hospital site specific i.e. there may be different hospital numbers collected for the patient at different points in the pathway. Purpose Codes and Classifications Note: all dates should be held in format suitable for date manipulations to take place, and should hold four character years. The actual format held will depend on the database being used. Used for unique identification to match records from different service providers. Used for unique identification to link events within a single service provider NHS Data Dictionary NHS Data Dictionary Page 1 of 23 Cancer Registration Dataset 1.3 Data Item ORGANISATION CODE(CODE OF PROVIDER) [Provider Code] 1.4 CARE SPELL IDENTIFIER [Unique Care Spell Number] 1.5 PATIENT FAMILY OR SURNAME [Surname] Version 4.0 Issue Date: 11.08.03 Description The organisation code of the Unit providing the diagnosis or care to the patient. DSCN 22/2002 (Waiting Times) requires collection of this data item at the following points in the patient journey: ORGANISATION CODE (PROVIDER FIRST SEEN) ORGANISATION CODE (PROVIDER FIRST CANCER SPECIALIST) ORGANISATION CODE (PROVIDER FIRST DIAGNOSTIC TEST) ORGANISATION CODE (PROVIDER DECISION TO TREAT) ORGANISATION CODE (PROVIDER FIRST TREATMENT) To link all activities for a patient to the same care spell. It is envisaged that this will be allocated on diagnosis, at the organisation where the diagnosis takes place, and will be communicated to all organisations providing care to the patient. The patient’s Surname Note: it must be possible to provide Cancer Registries with the patient’s surname as at the date of diagnosis. Purpose To enable analysis by Provider Code. Codes and Classifications NHS Data Dictionary Supporting Information, Administrative Codes, NHS Trust Used to link all activities for the patient to the same care spell. Used for unique identification to link records where the new NHS number is not available (e.g. to previous tumours, genetic requests, events carried out in private hospitals). It should be possible to phase out the use of surname once the use of NHS number becomes universal. NHS Data Dictionary Page 2 of 23 Cancer Registration Dataset Data Item PATIENT FORENAME OR PERSONAL NAME [Forenames] Description The patient’s Forenames PATIENT USUAL ADDRESS (AT DIAGNOSIS) [Address at Date of Diagnosis] POSTCODE OF USUAL ADDRESS (AT DIAGNOSIS) [Postcode at Date of Diagnosis] SEX [Sex] ONS rules for completion of this field will need to be followed. 1.10 1.12 1.6 1.7 1.8 1.9 Purpose Used for unique identification to link records where the new NHS number is not available (e.g. to previous tumours, genetic requests, events carried out in private hospitals). It should be possible to phase out the use of forename once the use of NHS number becomes universal. To derive and/or verify Postcode and for flagging cancers at NHSCR/approved ‘medical research’ cohort studies/other research Codes and Classifications NHS Data Dictionary ONS rules for completion of this field will need to be followed. The address at diagnosis is used to enable analysis by locality of patients. NHS Data Dictionary The patient’s sex To enable analysis by sex. BIRTH DATE [Date of Birth] The patient’s date of birth CODE OF GP PRACTICE (REGISTERED GMP) [GP Practice Code] Practice with whom the patient is registered To enable age at diagnosis to be established for epidemiological and survival analyses. To enable analysis by birth cohort and to assist linkage at ONS/NHSCR (and registries) for women who have changed their name on marriage (or back on separation/divorce). To enable analysis by GP Practice Code NHS Data Dictionary 0 – Not known 1 – Male 2 – Female 9 – Not specified Date format. Version 4.0 Issue Date: 11.08.03 NHS Data Dictionary NHS Data Dictionary Supporting Information, Administrative codes, GP Practice (6 character code allocated by PPA) Page 3 of 23 Cancer Registration Dataset 1.13 1.14 Data Item ORGANISATION CODE (RESPONSIBLE PCT) [GP PCG/PCT Code] (This need not be collected directly by clinical staff) PATIENT FAMILY OR SURNAME (AT BIRTH) [Surname at Birth] Version 4.0 Issue Date: 11.08.03 Description PCT corresponding to the GP Practice Code Purpose To enable analysis by GP PCT Code The patient’s surname at birth Note: This is not usually readily available from a hospital PAS system. It should be collected prospectively on contact with the patient. Used for unique identification to link previous records where the new NHS number is not available (e.g. to previous tumours, genetic requests). It should be possible to phase out the use of surname at birth once the use of NHS number becomes universal. Codes and Classifications NHS Data Dictionary Supporting Information, Administrative Codes (Primary Care Group, 5 character code starting with ‘4’, allocated by PPA). Note: this can be derived from GP Practice Code. Page 4 of 23 Cancer Registration Dataset 1.15 Data Item ETHNIC CATEGORY [Ethnic Category] Description The ethnic category of the patient, as specified by the patient. Purpose To enable analysis by ethnicity. Codes and Classifications White British A Irish B Any other white background C Mixed White and Black Caribbean D White and Black African E White and Asian F Any other mixed background G Asian or Asian British Indian H Pakistani J Bangladeshi K Any other Asian background L Black or Black British Caribbean M African N Any other black background P Other Ethnic Groups Chinese R Any other ethnic group S Not stated Not stated Z Version 4.0 Issue Date: 11.08.03 Page 5 of 23 Cancer Registration Dataset 2 Data Item Referrals 2.13 CANCER STATUS 4 Diagnosis Version 4.0 Issue Date: 11.08.03 Description For ‘two-week wait’ referrals, only one referral needs to be recorded. This will be the referral to the consultant (or team) who makes the actual diagnosis of cancer. If the original GP referral was to a noncancer specialist, with subsequent referral to a cancer specialist, then record all referrals. Where this information is exchanged, the appropriate data item name should be used to identify the particular instance of the data (See Description column). The Cancer Data Manual will detail particular requirements for screening, where the diagnosis takes place within screening services and referral is for treatment. Relevance of the data items in this section to the screening services will be investigated further. The status of this referral These fields should record the definitive diagnosis as known to the hospital in question, based on the information available at the time the items were completed. There will be only one definitive diagnosis entry held. Purpose Codes and Classifications The purpose of this item is to identify urgent GP referrals for suspected cancer who are subsequently diagnosed with cancer. This item is used to flag records that need data recorded on first definitive treatment (cancer patients) and those who do not (non-cancer patients). 1 - Suspected cancer (default) 2 - Diagnosis of cancer confirmed 3 - No cancer diagnosis identified by Trust 4 - No cancer diagnosis – determined automatically Each tumour lead will be asked to decide if a working diagnosis of cancer is useful for their site and if there is a need for more than one diagnosis entry to be collected. Page 6 of 23 Cancer Registration Dataset Data Item DIAGNOSIS DATE (CANCER) [Date of diagnosis] Description This field records the date of diagnosis of the tumour. It is required with the date of birth to derive the age at diagnosis and is used in the analysis of incidence trends and in the calculation of survival rates. The definition provided conforms to the international requirements specified by the European Network of Cancer Registries (ENCR). Purpose To calculate annual incidence rates and to determine the start date for survival analysis. 4.2 PRIMARY DIAGNOSIS (ICD) [Primary Site] The main cancer site for which the patient is receiving care. 4.3 TUMOUR LATERALITY [Laterality] The laterality of the primary tumour. To differentiate tumours in paired organs. To establish the numbers of various cancers to enable calculation of annual incidence rates. To allow for an assessment of subsequent treatment and outcome rates. To differentiate tumours in paired organs. 4.1 Codes and Classifications Order of declining priority: 1. Date of first histological or cytological confirmation of this malignancy (with the exception of histology or cytology at autopsy). This date should be, in the following order: a. date when the specimen was taken, or b. date of receipt by the pathologist, or c. date of the pathology report 2. Date of admission to hospital because of this malignancy. 3. When evaluated at an out-patient clinic only: date of first consultation at the out-patient clinic because of this malignancy. 4. Date of diagnosis, other than 1, 2 or 3. 5. Date of death, if no information is available other than the fact that the patient has died because of malignancy. 6. Date of death, if the malignancy is discovered at autopsy. Mappable to ICD-10 Tumour leads will be asked to provide relevant sites. L - Left R - Right M - Midline B - Bilateral 8 - Not applicable 9 – Not known Tumour leads will be asked which of these are relevant. Version 4.0 Issue Date: 11.08.03 Page 7 of 23 Cancer Registration Dataset 4.4 Data Item BASIS OF DIAGNOSIS (CANCER) [Basis of diagnosis] Version 4.0 Issue Date: 11.08.03 Description This field records the eligibility of the tumour for registration based on the best source of information known to the Trust and allows derivation of the degree of certainty of diagnosis. It is therefore an indicator of data quality, with microscopic histological verification being viewed as the ‘gold standard’ diagnosis. The definition provided conforms with the international requirements specified by the European Network of Cancer Registries (ENCR). Purpose To establish the certainty of diagnosis and in particular the histological confirmation rate for epidemiological analyses. Codes and Classifications Non-microscopic 0 - Death Certificate (The only information available is from a death certificate) 1 – Clinical (Diagnosis made before death but without the benefit of any of the following (2- 7)) 2 - Clinical Investigation (Includes all diagnostic techniques (e.g. X-rays, endoscopy, imaging, ultrasound, exploratory surgery and autopsy) without a tissue diagnosis) 4 - Specific Tumour Markers (Includes biochemical and/or immunological markers which are specific for a tumour site) Microscopic 5 – Cytology (Examination of cells whether from a primary or secondary site, including fluids aspirated using endoscopes or needles. Also including microscopic examination of peripheral blood films and trephine bone marrow aspirates). 6 - Histology of a metastasis (Histological examination of tissues from a metastasis, including autopsy specimens) 7 - Histology of a primary tumour (Histological examination of tissue from the primary tumour, however obtained, including all cutting and bone marrow biopsies. Also includes autopsy specimens of a primary tumour) 9 – Not known (No information on how the diagnosis has been made (e.g. PAS or HISS record only))(Default) Page 8 of 23 Cancer Registration Dataset 4.5 Data Item HISTOLOGY (SNOMED) [Histology] 4.6 GRADE OF DIFFERENTIATION (AT DIAGNOSIS) [Grade of differentiation] 5 Cancer Care Plan 5.6 PLANNED CANCER TREATMENT TYPE [Management modality] Version 4.0 Issue Date: 11.08.03 Description The cell type of the malignant disease Note: This data item also appears in the Pathology section. It is repeated here in order to record the definitive behaviour/histology of the tumour at the point of diagnosis (there may be a number of Pathology reports contributing to the diagnosis). Qualitative assessment of the differentiation of the tumour expressed as the extent to which a tumour resembles the normal tissue at that site. Note: This data item also appears in the Pathology section. It is repeated here in order to record the definitive grade of the tumour at the point of diagnosis (there may be a number of Pathology reports contributing to the diagnosis). There may be a number of cancer care plans, on different dates. What treatment(s) are planned for the patient DSCN 22/2002 (Waiting Times) requires collection of this data item at the following point in the patient journey: PLANNED CANCER TREATMENT TYPE (FIRST DEFINITIVE) Purpose To determine the incidence of tumours of different histology and behaviour for epidemiological analyses. Codes and Classifications Mappable to SNOMED which in turn maps to ICDO coding. Tumour leads will be asked to provide relevant histology descriptions. To enable the effect of differentiation grade on prognosis to be investigated. Site specific, but generic definition: GX - Grade of differentiation is not appropriate or cannot be assessed G1 - Well differentiated G2 - Moderately differentiated G3 - Poorly differentiated G4 - Undifferentiated anaplastic Tumour leads will be asked to provide information on any site-specific grading system. To determine the number of patients undergoing each primary treatment. To determine patterns of primary treatment. To enable analysis of discrete groups of patients particularly where several modalities are used. The code ‘07’ in italics below is not specified in DSCN 22/2002 i.e. is not applicable to waiting times. 01 - Surgery 02 - Teletherapy 03 - Chemotherapy 04 - Hormone Therapy 05 - Specialist Palliative Care 06 - Brachytherapy 07 – Biological 08 – Other 09 – Active Monitoring 99 – Not known (default) Page 9 of 23 Cancer Registration Dataset Data Item TREATMENT TYPE SEQUENCE (CANCER) [Treatment type sequence] Description The sequence of the treatment(s) above 6 Staging These fields should be recorded at the time that the first cancer care plan is agreed. Cancer registries require the first pretreatment stage, i.e. the stage at diagnosis. 6.1 T CATEGORY (FINAL PRETREATMENT) [Final pre-treatment T category] STAGING CERTAINTY FACTOR (T CATEGORY) [Certainty factor for T category] The ‘T’ part of the TNM classification used to describe the clinical stage of the tumour prior to treatment To allow for pre-treatment T stage to be taken into account in the analysis of treatment and outcome. UICC Coding The validity of the T part of the TNM classification according to the diagnostic methods employed. To provide a measure of the certainty with which the pre-treatment T stage was determined UICC Coding C1 - Evidence from standard diagnostic means (e.g. inspection, palpation and standard radiography, intraluminal endoscopy for tumours of certain organs) C2 - Evidence obtained by special diagnostic means (e.g. radiographic imaging in special projections, tomography, ultrasonography, lymphography, angiography, scintigraphy, MRI, endoscopy, biopsy and cytology) C3 - Evidence from surgical exploration, including biopsy and cytology C4 - Evidence of the extent of disease following definitive surgery and pathological examination of the resected specimen C5 - Evidence from autopsy 5.7 6.2 Version 4.0 Issue Date: 11.08.03 Purpose To determine the number of patients undergoing each primary treatment. To determine patterns of primary treatment. To enable analysis of discrete groups of patients particularly where several modalities are used. Codes and Classifications 1, 2, 3 etc. Tumour leads will be asked to advise on need for pre-surgical/surgical staging. Tumour leads will be asked to advise whether UICC coding is relevant to their particular site. Page 10 of 23 Cancer Registration Dataset 6.3 6.4 6.5 6.6 6.7 6.8 Data Item N CATEGORY (FINAL PRETREATMENT) [Final pre-treatment N category] STAGING CERTAINTY FACTOR (N CATEGORY) [Certainty factor for N category] M CATEGORY (FINAL PRETREATMENT) [Final pre-treatment M category] STAGING CERTAINTY FACTOR (M CATEGORY) [Certainty factor for M category] TNM CATEGORY (FINAL PRETREATMENT) [Overall pre-treatment stage group] STAGING CERTAINTY FACTOR (TNM CATEGORY) [Certainty factor for TNM stage] Version 4.0 Issue Date: 11.08.03 Description The ‘N’ part of the TNM classification used to describe the clinical stage of the tumour prior to treatment. Note that micro-metastases should be considered as positive. The validity of the N part of the TNM classification according to the diagnostic methods employed. Purpose To allow for pre-treatment N stage to be taken into account in the analysis of treatment and outcome. Codes and Classifications UICC Coding To provide a measure of the certainty with which the pre-treatment N stage was determined UICC Coding See Certainty factor for T Stage above The ‘M’ part of the TNM classification used to describe the clinical stage of the tumour prior to treatment To allow for pre-treatment M stage to be taken into account in the analysis of treatment and outcome. UICC Coding The validity of the M part of the TNM classification according to the diagnostic methods employed. To provide a measure of the certainty with which the pre-treatment M stage was determined UICC Coding See Certainty factor for T Stage above Overall clinical TNM stage of the tumour, derived from each T, N, M component prior to treatment To allow for this factor to be taken into account in the analysis of treatment and outcome. UICC Coding The validity of the TNM classification according to the diagnostic methods employed. To provide a measure of the certainty with which the pre-treatment TNM stage was determined UICC Coding See Certainty factor for T Stage above Page 11 of 23 Cancer Registration Dataset 6.9 6.10 6.11 6.12 6.13 7 7.1 Data Item SITE SPECIFIC STAGING CLASSIFICATION [Site Specific Classification] TNM CATEGORY (INTEGRATED) [Overall Pathological TNM stage grouping – integrated stage] T CATEGORY (INTEGRATED STAGE) [Integrated stage - T category] N CATEGORY (INTEGRATED STAGE) [Integrated stage – N category] M CATEGORY (INTEGRATED STAGE) [Integrated stage - M category] Surgery and Other Procedures SITE CODE (OF SURGERY) [Hospital] Version 4.0 Issue Date: 11.08.03 Description Non-TNM staging system, which may or may not map on to an equivalent TNM stage. Coding system will be specified as appropriate for each site. Purpose To allow for site specific classifications to be taken into account in the analysis of treatment and outcome. The combination of pT (pathological) with pN (pathological) and M (pre-treatment) into stage groups that are more or less homogeneous in respect of survival and for which the survival rates are distinctive. The ‘T’ part of the TNM classification used to describe the integrated stage of the tumour To allow for the integrated TNM stage to be taken into account in the analysis of treatment and outcome. The ‘N’ part of the TNM classification used to describe the integrated stage of the tumour. Note that micro-metastases should be considered as positive. The ‘M’ part of the TNM classification used to describe the integrated stage of the tumour This can be adapted for other procedures including interventional radiology, laser treatment, endoscopies etc. and photodynamic procedures. This also includes procedures offered as supportive care. The hospital at which the surgery takes place. Codes and Classifications Site specific – e.g. Dukes for colorectal, NPI for breast, “Limited’ or ‘Extensive’ stage disease for Small Cell Lung Cancer Tumour leads will be asked to advise on details about any site-specific coding system used. UICC Tumour leads will be asked to comment on relevance of UICC coding. To allow for integrated T stage to be taken into account in the analysis of treatment and outcome. UICC Coding To allow for integrated N stage to be taken into account in the analysis of treatment and outcome. UICC Coding To allow for integrated M stage to be taken into account in the analysis of treatment and outcome. UICC Coding Required because different activities for a patient may be carried out at different service provider sites. To enable reports and analysis by hospital and/or cancer network. NHS Data Dictionary Supporting Information, Administrative Codes, NHS Trust Site (5 character code, starts with ‘R’, allocated by OCS) Page 12 of 23 Cancer Registration Dataset 7.2 7.4 7.9 7.10 7.11 8 Data Item CONSULTANT CODE [Managing consultant surgeon] CANCER TREATMENT INTENT [Treatment intent] PROCEDURE DATE [Date of surgery] PRIMARY PROCEDURE (OPCS) [Main surgical procedure] PROCEDURE (OPCS) [Sub-procedure] Pathology Details Version 4.0 Issue Date: 11.08.03 Description The consultant in overall charge of the patient’s treatment. Purpose To enable reports and analysis by consultant. Codes and Classifications NHS Data Dictionary Supporting Information, Administrative Codes (Practitioner Code for a Consultant) The purpose of the surgical procedure(s) being carried out To enable analysis by treatment intent The date that the surgical procedure(s) below started. To determine the time interval between referral/diagnosis by the specialist team and start of surgical treatment. D - Diagnostic S - Staging C – Curative P – Palliative 9 – Not known (default) Date format DSCN 22/2002 (Waiting Times) requires collection of this data item at the following point in the patient journey: CLINICAL INTERVENTION DATE (FIRST DIAGNOSTIC TEST). The main surgical procedure carried out Any sub-procedure carried out (This may occur more than once) Note: it is expected that all the data items on the minimum RCPath dataset will be collected. The pathology data items below are a subset of that dataset. A patient may have any number of pathology reports, and there may be more than one pathology report per specimen. If the original report is reviewed or revised, then a new pathology module will need to be completed and dated, with the data item ‘Second Opinion’ on the RCPath Dataset marked as ‘Y’. To determine type of surgery performed to enable analysis of surgically related data. Mappable to OPCS-4 Tumour leads will be asked to supply lists of procedures. To determine type of surgery performed to enable analysis of surgically related data. Mappable to OPCS-4 Tumour leads will be asked to supply lists of procedures. Tumour leads will be asked to comment on the relevance of the generic data items below to their particular site. Page 13 of 23 Cancer Registration Dataset 8.1 8.2 8.4 8.5 8.6 8.7 Data Item PATHOLOGY INVESTIGATION TYPE [Report Type] SAMPLE RECEIPT DATE [Date specimen received] CONSULTANT CODE (PATHOLOGIST) [Authorising pathologist] ORGANISATION CODE (OF REPORTING PATHOLOGY) [Reporting organisation] PRIMARY DIAGNOSIS (ICD) [Primary diagnosis (Site)] TUMOUR LATERALITY [Laterality] Version 4.0 Issue Date: 11.08.03 Description Cytology, Biopsy or Excision Purpose To record the type of specimen reported and hence the RCPath dataset items that should be recorded. The date that the specimen was received by the pathology laboratory. To enable the date of diagnosis to be determined for epidemiological purposes (annual incidence rates and survival analyses) To enable reports and analysis by consultant The code of the pathologist authorising the report Codes and Classifications CY - Cytology sample BX - Biopsy sample EX - Excision sample 9 – Uncertain/other Date format NHS Data Dictionary Supporting Information, Administrative Codes (Practitioner Code for a Consultant) The organisation at which the authorising pathologist is based. Required because different activities for a patient may be carried out at different service provider sites. To enable reports and analysis by hospital and/or cancer network. NHS Data Dictionary Supporting Information, Administrative Codes, NHS Trust Site (5 character code, starts with ‘R’, allocated by OCS) The topographical site of the tumour To establish the numbers of various cancers to enable calculation of annual incidence rates. To allow for an assessment of subsequent treatment and outcome rates. To differentiate tumours in paired organs. To define the site of the Pathology specimen. Mappable to ICD10 Side L - Left R - Right B - Bilateral M - Midline 8 - Not applicable 9 - Not known Page 14 of 23 Cancer Registration Dataset Data Item INVASIVE LESION SIZE [Tumour size – maximum diameter] Description To record the size of the tumour 8.9 SYNCHRONOUS TUMOUR INDICATOR [Synchronous tumour] To record the presence of multiple tumours for a tumour site. 8.10 HISTOLOGY (SNOMED) [Histology] GRADE OF DIFFERENTIATION [Grade of differentiation] The cell type of the malignant disease 8.8 8.11 8.12 8.13 CANCER VASCULAR OR LYMPHATIC INVASION [Vascular/lymphatic invasion] EXCISION MARGIN [Excision Margins] Version 4.0 Issue Date: 11.08.03 Qualitative assessment of the differentiation of the tumour expressed as the extent to which a tumour resembles the normal tissue at that site. Purpose To obtain information of prognostic value that can (for some tumour sites) be used to derive the pT component of the TNM stage. Tumour size cannot be used to calculate pT if the tumour has been reduced in size by treatment undertaken prior to surgery. To enable complete reporting of separate tumours diagnosed simultaneously at the same primary site. With the exception of bladder and prostate tumours, a separate report form should be completed for each synchronous tumour reported To determine the incidence of tumours of different histology and behaviour for epidemiological purposes. To enable the effect of differentiation grade on prognosis to be investigated. To record the presence of unequivocal tumour in vascular spaces. To provide information of prognostic importance. Whether all the excision margins were clear of tumour. To determine adequacy of excision. Codes and Classifications N - No, no synchronous tumours present Y - Yes, synchronous tumours present 9 - Not known (default) Mappable to SNOMed which in turn maps to ICDO coding Site specific, but generic definition: GX - Grade of differentiation is not appropriate or cannot be assessed G1 - Well differentiated G2 - Moderately differentiated G3 - Poorly differentiated G4 - Undifferentiated anaplastic N - No, vascular/lymphatic invasion not present Y - Yes, vascular/lymphatic invasion present U - Uncertain whether vascular invasion is present or not 9 - Not known (default) A - Margin involved B < 1mm clear C - 1-5 mm clear D - > 5 mm clear U - Uncertain 8 - Not applicable (default) Page 15 of 23 Cancer Registration Dataset 8.14 8.15 Data Item NODES EXAMINED NUMBER [Local/regional nodes examined] NODES POSITIVE NUMBER [Local/regional nodes positive] 8.16 T CATEGORY (PATHOLOGICAL) [Pathological T category] 8.17 N CATEGORY (PATHOLOGICAL) [Pathological N category] 8.18 M CATEGORY (PATHOLOGICAL) [Pathological M category] TNM CATEGORY (PATHOLOGICAL) [Overall Pathological TNM stage grouping] SERVICE REPORT STATUS [Second opinion] 8.19 8.21 Version 4.0 Issue Date: 11.08.03 Description The number of local/regional nodes examined. Local/regional nodes are defined by the UICC TNM Atlas and vary with the primary cancer site The number of local/regional nodes reported as being positive for the presence of tumour metastases. Local/regional nodes are defined by the UICC TNM Atlas and vary with the primary cancer site The extent of the primary tumour after excision or biopsy of the primary cancer. This is derived from Local Invasion Tumour Extent and Structure (s) Invaded data items on the Pathology dataset The histological evidence of the absence or presence and extent of regional lymph node metastases. This is derived from Local/Regional nodes positive, Other Nodes positive and Marker lymph node 1 positive data items on the Pathology dataset. The histological evidence of the absence or presence of distant metastases. This is derived from the Distant Metastases data item on the Pathology dataset. The combination of pT with pN and pM into stage groups that are more or less homogeneous in respect of survival and for which the survival rates are distinctive. This field is a flag to indicate that the report is a second opinion or supplementary report on the tumour. Purpose To obtain information relating to the quality of the diagnostic process. Codes and Classifications Detail of the nodes involved will be supplied in the Cancer Data Manual. To obtain information of prognostic value that can be used to derive the pN component of the TNM stage. Detail of the nodes involved will be supplied in the Cancer Data Manual. To allow for the pathological T stage to be taken into account in the analysis of treatment and outcome. UICC Tumour leads will be asked to comment on relevance of UICC coding. To allow for the pathological N stage to be taken into account in the analysis of treatment and outcome. UICC Tumour leads will be asked to comment on relevance of UICC coding. To allow for the pathological M stage to be taken into account in the analysis of treatment and outcome. UICC Tumour leads will be asked to comment on relevance of UICC coding. To allow for the pathological TNM stage to be taken into account in the analysis of treatment and outcome. UICC Tumour leads will be asked to comment on relevance of UICC coding. 1 – final (complete) 2 – preliminary (interim) 3 – test not available 4 - unspecified 5 – second opinion/supplementary report Page 16 of 23 Cancer Registration Dataset Data Item SPECIMEN NATURE [Nature of specimen] Description This field records the nature of the specimen reported. 8.23 ORGANISATION CODE (REQUESTED BY) [Organisation of referral] This field records the organization at which the referring consultant/GP is based. 8.24 CARE PROFESSIONAL CODE (REQUESTED BY) [Referred by] T CATEGORY EXTENDED (PATHOLOGICAL) [Local invasion – tumour extent] M CATEGORY EXTENDED (PATHOLOGICAL) [Distant metastases] Chemotherapy and other drugs The consultant referring the specimen. This is not required if the source of referral is a GP. 8.22 8.25 8.26 9 Version 4.0 Issue Date: 11.08.03 The extent of the invasion of the tumour. This is used to derive the pT component of the pTpNpM stage. In some cases, more than one code can be selected for a given tumour. The presence of metastatic deposits of the primary tumour at distant metastatic sites. The field is used to derive the pM component of the pTpNpM stage. Chemotherapy and/or other anti-Cancer and/or Supportive drugs given to the patient during their treatment. Purpose Codes and Classifications 1 - Primary tumour 2 - Re-excision of primary tumour 3 - Recurrence 4 - Nodes 5 - Metastatic site other than nodes 9 - Not known For NHS institutions, this is the site’s organization code If the source of referral is a GP, the GP Practice code is recorded. Coding for voluntary organizations and private hospitals will also be required. Defaults: V81999 Practice Code unknown V81998 Practice Code of MOD Doctor GMC Code of the consultant. Defaults: C9999998 – locum consultant code C9999999 – consultant code unknown UICC coding. UICC Coding Page 17 of 23 Cancer Registration Dataset Data Item SITE CODE (OF CANCER DRUG TREATMENT) [Hospital] Description The hospital at which the drug treatment takes place CONSULTANT CODE [Managing consultant] DRUG THERAPY TYPE [Drug therapy type] The consultant in overall charge of the patient’s drug treatment The type of drug therapy administered To establish patterns of drug therapy treatment 9.8 DRUG TREATMENT INTENT [Treatment intent] The intended outcome of treatment 9.10 START DATE (ANTICANCER DRUG REGIMEN) [Drug treatment start date] Radiotherapy Radiotherapy (teletherapy) Record the date on which the first dose of the drug is administered to the patient. To establish the frequency of different treatment intents. To monitor treatment related outcomes. To assess patterns of chemotherapy or other drug therapy practice for comparison with best practice guidelines To enable the date of the first definitive treatment to be recorded. Cancer Registries only require the start date of the first chemotherapy course 9.1 9.2 9.7 10 10 10.1 SITE CODE (OF TELETHERAPY) [Hospital] 10.2 CONSULTANT CODE [Managing consultant] Version 4.0 Issue Date: 11.08.03 A course of teletherapy is defined as a string of prescriptions which are consecutive. The hospital at which the teletherapy takes place The consultant in overall charge of the patient’s teletherapy treatment Purpose Required because different activities for a patient may be carried out at different service provider sites. To enable reports and analysis by hospital and/or cancer network. To enable reports and analysis by consultant. Required because different activities for a patient may be carried out at different service provider sites. To enable reports and analysis by hospital and/or cancer network. To enable reports and analysis by consultant. Codes and Classifications NHS Data Dictionary Supporting Information, Administrative Codes, NHS Trust Site (5 character code, starts with ‘R’, allocated by OCS) NHS Data Dictionary Supporting Information, Administrative Codes (Practitioner Code for a Consultant) C - Chemotherapy H - Hormone/endocrine therapy I - Immunotherapy O - Other C - Curative P - Palliative A - Adjuvant N - Neoadjuvant 9 - Not known (default) Date format NHS Data Dictionary Supporting Information, Administrative Codes, NHS Trust Site (5 character code, starts with ‘R’, allocated by OCS) NHS Data Dictionary Supporting Information, Administrative Codes (Practitioner Code for a Consultant) Page 18 of 23 Cancer Registration Dataset 10.6 10.7 10.8 11 Data Item CANCER TREATMENT INTENT [Treatment intent] RADIOTHERAPY ANATOMICAL TREATMENT SITE [Anatomical treatment site] START DATE (TELETHERAPY TREATMENT COURSE) [Teletherapy start date] Radiotherapy (Brachytherapy) 11.1 SITE CODE (OF BRACHYTHERAPY) [Hospital] 11.2 CONSULTANT CODE [Managing consultant] Version 4.0 Issue Date: 11.08.03 Description Curative - any treatment where long-term survival is the aim of a significant proportion of patients Palliative - any treatment where the clear intention is to improve symptoms and possibly prolong life but where long-term survival is unlikely Adjuvant - an adjunct to a potentially ablative local treatment Neoadjuvant - an adjuvant treatment given prior to a potentially ablative local treatment Not known The part of the body to which the prescription is administered. The date on which the first fraction of teletherapy for this prescription is administered to the patient. A course of brachytherapy is defined as a string of prescriptions which are consecutive. The hospital at which the brachytherapy takes place The consultant in overall charge of the patient’s brachytherapy treatment Purpose To establish the frequency of each treatment intent. To monitor treatment related outcomes. To assess patterns of teletherapy practice for comparison with best practice guidelines Codes and Classifications C - Curative P - Palliative A - Adjuvant N - Neoadjuvant 9 - Not known (default) To assess patterns of teletherapy practice for comparison with best practice guidelines. OPCS ‘Z’ Codes *To enable the measurement of the interval from the date of decision to treat to start of treatment, to monitor delays. Required because different activities for a patient may be carried out at different service provider sites. To enable reports and analysis by hospital and/or cancer network. To enable reports and analysis by consultant. NHS Data Dictionary Supporting Information, Administrative Codes, NHS Trust Site (5 character code, starts with ‘R’, allocated by OCS) NHS Data Dictionary Supporting Information, Administrative Codes (Practitioner Code for a Consultant) Page 19 of 23 Cancer Registration Dataset 11.6 11.7 11.8 11.9 15 15.1 Data Item CANCER TREATMENT INTENT [Treatment intent] BRACHYTHERAPY TYPE [Type of brachytherapy] RADIOTHERAPY ANATOMICAL TREATMENT SITE [Anatomical treatment site] START DATE (BRACHYTHERAPY TREATMENT COURSE) [Brachytherapy start date] Death Details DEATH DATE [Date of death] Version 4.0 Issue Date: 11.08.03 Description Curative - any treatment where long-term survival is the aim of a significant proportion of patients Palliative - any treatment where the clear intention is to improve symptoms and possibly prolong life but where long-term survival is unlikely Adjuvant - an adjunct to a potentially ablative local treatment Neoadjuvant - an adjuvant treatment given prior to a potentially ablative local treatment Not known The type of brachytherapy being used Purpose To establish the frequency of each treatment intent. To monitor treatment related outcomes. To assess patterns of brachytherapy practice for comparison with best practice guidelines Codes and Classifications C - Curative P - Palliative A - Adjuvant N - Neoadjuvant 9 - Not known (default) To assess patterns of brachytherapy practice for comparison with best practice guidelines The part of the body to which the prescription is administered. To assess patterns of brachytherapy practice for comparison with best practice guidelines. BI – Interstitial BC - Intra-cavitary BT – NOS US - Unsealed sources OPCS ‘Z’ Codes. The date on which the first fraction of brachytherapy for this prescription is administered to the patient. To enable the measurement of the interval from the date of decision to treat to start of treatment, to monitor delays. The date the patient died. Left blank if the patient is still alive. To determine survival rates and mortality rates NHS Data Dictionary, Attribute DEATH DATE Page 20 of 23 Cancer Registration Dataset 15.2 15.3 15.5 15.6 15.7 15.8 Data Item DEATH LOCATION TYPE (CANCER) [Place of death] Codes and Classifications 1 - Hospital 2 - NHS hospice/specialist palliative care unit 3 - Voluntary hospice/specialist palliative care unit 4 - Patient’s own home 5 - Care home 99 - Other DEATH CAUSE The source of the information about the To provide an indication of the accuracy of 1 - death certificate IDENTIFICATION death of the patient the cause of death. 2 - NHSCR Follow-up METHOD 3 - hospital records [How cause of death 4 - verbal communication established] 5 - post-mortem The data items shaded below will usually not be collected directly by the Trust; information would come from Cancer Registries. DEATH CAUSE As recorded on the death certificate. Will To identify cancer-specific deaths ICD-10 coding CODE (IMMEDIATE) be provided by Cancer Registry if death [Cause of death – did not take place in the Trust. immediate] DEATH CAUSE As recorded on the death certificate. Will To identify cancer-specific deaths ICD-10 coding CODE (CONDITION) be provided by Cancer Registry if death [Cause of death – did not take place in the Trust. condition giving rise to death] DEATH CAUSE As recorded on the death certificate. Will To identify cancer-specific deaths ICD-10 coding CODE be provided by Cancer Registry if death (UNDERLYING) did not take place in the Trust. [Cause of death underlying condition leading to death] DEATH CAUSE As recorded on the death certificate. Will To identify cancer-specific deaths ICD-10 coding CODE be provided by Cancer Registry if death (SIGNIFICANT) did not take place in the Trust. [Cause of death significant condition not directly related to death] Version 4.0 Issue Date: 11.08.03 Description Where the patient died Purpose To enable reports and analyses by place of death. Page 21 of 23 Cancer Registration Dataset B.1 Data Item DIAGNOSTIC ROUTE [Screening status] Description Purpose Indicates the patient’s route to diagnosis. B.7 ENDOCRINE THERAPY TYPE [Endocrine therapy type] The type of endocrine therapy given to the patient B.8 MARKER LYMPH NODE RESULT [Marker lymph node 1 positive] C.1 DIAGNOSTIC ROUTE [Screening status] To record the presence or absence of metastases in a ‘marker lymph node’ that is of therapeutic and prognostic importance. This is site-specific: For breast cancer this will be the sentinal node. (Required for Cancer Registry purposes) Indicates the patient’s route to diagnosis. C.10 MARKER LYMPH NODE RESULT [Marker lymph node 1 positive] Version 4.0 Issue Date: 11.08.03 To record the presence or absence of metastases in a ‘marker lymph node’ that is of therapeutic and prognostic importance. This is site-specific: For colorectal cancer this will be the apical node. (Required for Cancer Registry purposes) Codes and Classifications 1 - cancers detected by national screening programme 2 - interval cancers occurring in patients screened by a national screening programme 3 - other cancers 9 - not known (default) R - Radiotherapy ablation (e.g. radiation induced menopause) S - Surgical ablation (e.g. oophrectomy, orchidectomy) M - Medical ablation (e.g. LHRH analogues) A - Adjuvant endocrine therapy (e.g. Tamoxifen + surgery) D - Definitive endocrine therapy (e.g. Tamoxifen alone) O -Other N - No, marker lymph node 1 negative Y - Yes, marker lymph node 1 positive present 9 - Status of marker lymph node 1 unknown 8 - Not applicable 1 - cancers detected by national screening programme 2 - interval cancers occurring in patients screened by a national screening programme 3 - other cancers 9 - not known (default) N - No, marker lymph node 1 negative Y - Yes, marker lymph node 1 positive present 9 - Status of marker lymph node 1 unknown 8 - Not applicable Page 22 of 23 Cancer Registration Dataset HN1 HN.2 HN.3 G.2 Data Item PATIENT HISTORY (CANCER DIAGNOSIS) [History of non-head and neck cancer – site] YEAR CANCER DIAGNOSED [History of non-head and neck cancer - year of diagnosis] PREVIOUS TREATMENT ELSEWHERE [Previous treatment for head and neck cancer elsewhere] DIAGNOSTIC ROUTE [Screening status] Version 4.0 Issue Date: 11.08.03 Description Purpose Any non head and neck primary malignancies that have occurred or subsequently occur in the patient’s follow up. Codes and Classifications Any ICD-10 code. 99 Unknown Year of either histological, cytological, radiological or clinical diagnosis of the cancer above. 4 digit year. Has the patient been treated for this current head and neck tumour elsewhere? Y - Yes N- No 9 – Not known (default) Indicates the patient’s route to diagnosis. 1 - cancers detected by national screening programme 2 - interval cancers occurring in patients screened by a national screening programme 3 - other cancers 9 - not known (default) Page 23 of 23