Information Specification

The data items required for National Cancer Data Standards for Wales – Site Specific – Sarcoma and their equivalent labels in COSD V9.0, where there is an equivalent, are listed below.

 

Where the specification cites NHS Wales Data Dictionary, please refer to the Dictionary for the relevant guidance i.e. definition, format, or code list.

 

For consistency, all dates listed in the Specification are standardised as ccyymmdd.

 

Where D is denoted in Status, this indicates that the information should be derived from another data item. This typically occurs with data items that are simply text representations of their code counterparts. Other Status codes are M (Mandatory), R (Required) – the data item should be recorded where applicable and O (Optional).

 

 

Core data items should be collected for all cancers.  To reduce replication of information, Core data items have not been listed in this site-specific Standard and users should refer to National Cancer Data Standards for Wales 1. National Cancer Data Set - Full list DSCNs.xlsx (live.com) for a list of Core requirements. However, in some cases, the site-specific application of Core data items may differ e.g. a particular tumour site may require additional or fewer codes to those already published in Core, or perhaps have additional business rules as to how the Core data item should be coded. Where this occurs, the Core data item will be replicated in the site-specific Standard with the respective additional site-specific detail. These are flagged in the following table with an * next to the data item name.

 

 

For data items used in the National Cancer Data Standards for Wales that already exist within the NHS Wales Data Dictionary. These data items have been flagged with an † next to the data item name, as whilst this introduces a change to an existing information standard, the immediate use of this mandate will be used as a framework for the development of the CIS, therefore service/data providers should continue with ‘business as usual’ in terms of the data being collected and reported.

 

 

 

National Cancer Data Standards for Wales – Sarcoma

 

Reporting Data Item

Definition

Format

Code List (Code)

Code List (Text)

Status

COSD

Diagnosis (One occurrence per core diagnosis)

Sarcoma Tumour Site (Bone)

Location of the bone sarcoma within the body as defined by OPCS4 code. (This is more specific than ICD10/ICD03 Sites)

Note: Use Cranium (Z639) for instances of Sarcoma of the Skull

Note: The OPCS-4 site codes here are used in the context of providing a list of established reference codes already in use and not in the context in which they would typically occur i.e. in conjunction with OPCS-4 procedure codes. 

Code List

Z639

Cranium

R

Sarcoma Tumour Site (Bone) (SA11000)

Z649

Face

Z659

Jaw

Z663

Cervical Spine

Z664

Thoracic Spine

Z665

Lumbar Spine

Z681

Clavicle

Z684

Glenoid

Z685

Scapula

Z699

Humerus

Z709

Radius

Z719

Ulna

Z724

Carpal

Z732

Metacarpal

Z733

Thumb

Z742

Finger

Z746

Sternum

Z751

IIeum

Z753

Ischium

Z754

Pubis

Z755

Acetabulum

Z756

Coccyx

Z769

Femur

Z779

Tibia

Z786

Fibula

Z787

Patella

Z799

Tarsus

Z802

Metatarsus

Z803

Great Toe

Z804

Toe

Z928

Other Specified Region of Body

Z929

Unknown

Sarcoma Tumour Subsite (Bone)

Sub-location of the bone sarcoma within the tumour site.
This gives a more detailed location of the tumour and should be recorded by speciality centres treating the patient.

Code List

PR

Proximal

R

Sarcoma Tumour Subsite (Bone) (SA11010)

DS

Distal

DP

Diaphyseal (Middle)

TO

Total

OO

Other

NK

Not Known

Sarcoma Tumour Site
(Soft Tissue)

Location of the soft tissue sarcoma within the body as defined by OPCS4 code. (This is more specific than ICD10/ICD03 sites)

Note: The OPCS-4 site codes here are used in the context of providing a list of established reference codes already in use and not in the context in which they would typically occur i.e. in conjunction with OPCS-4 procedure codes. 

Code List

Z272

Stomach

R

Sarcoma Tumour Site
(Soft Tissue) (SA11080)

Z301

Liver

Z459

Uterus

Z533

Peritoneum

Z891

Shoulder

Z892

Upper Arm

Z893

Forearm

Z894

Hand

Z898

Specified Arm Region (to include wrist and elbow)

Z901

Buttock

Z903

Upper Leg (to include thigh)

Z904

Lower Leg (to include calf)

Z905

Foot

Z908

Specified leg region (to include groin, knee, ankle)

Z921

Head

Z923

Neck

Z924

Chest (to include Intrathoracic)

Z927

Trunk (to include upper and lower)

Z928

Other Specified Region of Body

Z929

Unknown

Sarcoma Tumour Subsite
(Soft Tissue)

Sub-location of the soft tissue sarcoma within the tumour site. This gives a more detailed location of the tumour and should be recorded by the specialist centre treating the patient

Code List

RP

Retroperitoneal (Subsite of Z53.3)

R

Sarcoma Tumour Subsite
(Soft Tissue) (SA11090)

IP

Intraperitoneal (subsite of Z53.3)

WR

Wrist (Subsite of Z89.8)

EB

Elbow (Subsite of Z89.8)

UT

Upper Trunk (Subsite of Z92.7)

LT

Lower Trunk (Subsite of Z92.7)

AD

Adductors (Subsite of Z90.3 & Z90.4)

AN

Anterior (subsite of Z90.3 & Z90.4)

PO

Posterior (Subsite of Z90.3 & Z90.4)

LA

Lateral (Subsite of Z90.3 & Z90.4)

NK

Not Known (No record or Test not carried out)

NA

Not Applicable

Multifocal or Synchronous Tumour Indicator

An indicator of the presence of tumours at multiple sites arising synchronously/concurrently

Code List

Y

Yes

R

Multifocal or Synchronous Tumour Indicator (SA11025)

N

No

9

Not known

Diagnosis - Rhabdomyosarcoma and Other Soft Tissue Sarcomas (One occurrence per core diagnosis)

IRS Post Surgical Group

IRS group defines the post-surgical disease status at diagnosis. This information should be available for the MDT discussion following treatment but will only apply to a small number of cases. 

Note: Please refer to user guide for Code List (Text) definitions

Code List

1

Group 1

R

IRS Post Surgical Group (CT6350)

2

Group 2

3

Group 3 

4

Group 4

IRS Post Surgical Group Date

The date on which the IRS Post Surgical Group was recorded

ccyymmdd

N/A

N/A

R

IRS Post Surgical Group Date (CT6750)

Rhabdomyosarcoma Site Prognosis Code

Grouping of anatomical sites which imply prognostic significance. This information should be available for the MDT discussion but will only apply to a small number of cases. 

Note: Please refer to user guide for Code List (Text) definitions

Code List

F

Favourable Sites

R

Rhabdomyosarcoma Site Prognosis Code (CT6370)

U

Unfavourable Sites

Diagnosis - Ewings (One occurrence per core diagnosis)

Tumour Volume at Diagnosis

Radiologically calculated estimate of tumour volume at diagnosis which has value in determining treatment.

Code List

L

Less than 200ml

M

Tumour Volume at Diagnosis (CT6450)

M

200ml or greater

Treatment - Radiotherapy - Sarcoma.  To carry additional radiotherapy cancer treatment details for Sarcoma  (One occurrence per Core Treatment)

Proton Beam Therapy Referral Eligibility 

Does the patient fulfil nationally set referral criteria for proton beam therapy?

Code List

Y

Yes, referral criteria fulfilled

R

N/A

N

No, referral criteria not fulfilled

Proton Beam Therapy Referral 

Has the patient fulfilling nationally set referral criteria for proton beam therapy been referred for PBT?

Note: This data item is only required where Proton Beam Therapy Referral Eligibility is recorded as Yes, referral criteria fulfilled

Code List

R

Referred for PBT

R

N/A

NR

Not Referred for PBT

NK

Not Known/Not Recorded

Pathology  (One occurrence per Pathology Report)

Grade of Differentiation (Pathological)*

The definitive grade of the tumour based on the evidence from the pathological examination. 

Note: In Core there are codes of G4 (Undifferentiated/anaplastic) and GX (Grade of differentiation is not appropriate or cannot be assessed). Those codes are not applicable within the Sarcoma site-specific standard. 

Code List

G1

Well differentiated (Low Grade)

R

Grade of Differentiation (Pathological) (pCR0860)

G2

Moderately differentiated (Intermediate Grade)

G3

Poorly differentiated (High Grade)

Residual Tumour Classification

The absence or presence of residual tumour after treatment is reported by the symbol R (Residual).
The R classification deals with tumour status after treatment - refer to UICC (International Union Against Cancer) TNM (Tumour, Node and Metastasis)  Classifications of Malignant Tumours.
It reflects the effects of therapy, influences further therapeutic procedures and is a strong predictor of prognosis.

Code List

RX

Presence of residual tumour cannot be assessed

R

N/A

R0

No residual tumour

R1

Microscopic residual tumour

R2

Macroscopic residual tumour

Pathology - Bone and Soft Tissue (One occurrence per Pathology Report)

Genetic Confirmation Indicator

Are there any cytogenetic or molecular genetic data confirming the histological diagnosis?

Code List

Y

Yes, confirmed

R

Genetic Confirmation Indicator (pSA11170)

N

No, not confirmed

X

Test not done

Pathology - Bone (One occurrence per Pathology Report)

Extent of Local Spread (Bone)

FOR MEDULLARY TUMOURS ONLY
Does the tumour breach the cortex? The extent of local spread will determine whether the tumour is intracompartmental or extracompartmental.

Code List

I

Intracompartmental

R

Extent of Local Spread (Bone) (pSA11130)

E

Extracompartmental

Tumour Necrosis

Approximate percentage of tumour necrosis in response to pre-operative therapy.

max n3
Range 0-100

N/A

N/A

R

Tumour Necrosis (pSA11140)

Pathology - Soft Tissue  (One occurrence per Pathology Report)

Tumour Depth

Record the deepest tissue compartment where the tumour is located

Code List

1

Intradermal/cutaneous

R

Tumour Depth (pSA11100)

2

Subcutaneous

3

Fascial/subfascial

9

Not Known

Mitotic Rate (Sarcoma)

Mitotic rate per 5mm squared. Also known as mitotic index and mitotic count. 
Only applicable to GISTS.

max n3

N/A

N/A

R

Mitotic Rate (Sarcoma) (pSA11220)

Laboratory Results - Rhabdomyosarcoma and Other soft tissue sarcomas  (One occurrence per submission)

Cytogenetics for Alveolar Rhabdomyosarcoma

Presence of a specific cytogenetic abnormality.
This information should be available for the MDT discussion but will only apply to a small number of cases.

Code List

P

Fusion positive

M

Cytogenetics for Alveolar Rhabdomyosarcoma (CT6360)

N

Fusion negative

X

Non informative

9

Not known (Not available)

Laboratory Results - Ewings  (One occurrence per submission)

Cytogenetics for Ewings Sarcoma

Cytogenetic analysis

Code List

11

t(11;22)

M

Cytogenetics for Ewings Sarcoma (CT6460)

 

 

 

VT

Variant Translocation

 

 

 

 

 

NG

Negative

 

 

 

 

 

NA

Not Available