Reporting Data Item

Definition

Format

Code List (Code)

Code List (Text)

Status

COSD

Childhood - Core - To be completed for all cases 

Childhood - Referral.  To be collected for all Childhood tumours.  To carry additional referral details for Childhood

Specialty (Referrer to Specialist)†

The specialty of the person referring to the Principal Treatment Centre (PTC)

Code List

See Main Specialty (Consultant)

Refer to code list in NHS Wales Data Dictionary Main Specialty (Consultant)

R

Specialty (Referrer to Specialist) (CT6050)

Note: Refer to code list in NHS Wales Data Dictionary Main Specialty (Consultant)

Childhood - Diagnosis.  To be collected for all Childhood tumours.  To carry additional diagnosis details for Childhood

Consultant Specialty (At Diagnosis)†

The specialty of the consultant responsible for the patient at the time of diagnosis

Code List

See Main Specialty (Consultant)

Refer to code list in NHS Wales Data Dictionary Main Specialty (Consultant)

R

Consultant Specialty (At Diagnosis) (CT6030)

Note: Refer to code list in NHS Wales Data Dictionary Main Specialty (Consultant)

Consultant Age Specialty (At Diagnosis)

The age group specialty of the consultant responsible for the patient at the time of the diagnosis.  This will be defined by the MDT

Code List

P

Paediatric 

R

Consultant Age Specialty (At Diagnosis) (CT6040)

T

Teenage and Young Adult

A

Adult

Code List

100

Fully active, normal

R

N/A

90

Minor restrictions with strenuous physical activity

80

Active, but gets tired more quickly

70

Both greater restriction of, and less time spent in, active play

 Lansky Performance Scale (At Diagnosis)

 Record the Lansky Performance Scale for the patient at the time of diagnosis

60

Up and around, but minimal active play; keeps busy with quieter activities

 Note: Not applicable to patients over 16 years of age

50

Lying around much of the day, but gets dressed; no active play; participates in all quiet play and activities

40

Mostly in bed; participates in quiet activities

30

Stuck in bed; needs help even for quiet play

20

Often sleeping; play is entirely limited to very passive activities

10

Does not play nor get out of bed

0

Unresponsive

Childhood - Surgery Details.  Additional data item to be collected for Surgery for all Childhood tumours.  To carry additional diagnosis details for Childhood

Time of Surgery

Record the start time  that the surgery was performed. The start time is defined as the start of the procedure.

24 hr

N/A

N/A

R

N/A

hh:mm

Childhood - Treatment - Chemotherapy.  To carry chemotherapy treatment details for Childhood

Specialty Sub Code (Chemotherapy Consultant)

The age group specialty of the Consultant responsible for prescription of chemotherapy

Code List

P

Paediatric

R

Specialty Sub Code (Chemotherapy Consultant) (CT6160)

T

Teenage and Young Adult

A

Adult

Childhood - Bone Marrow Transplant

Bone Marrow Transplant (BMT) Serology or Viral Screen

Has the patient undergone a BMT Serology or Viral screen

Code List

Y

Yes

M

N/A

N

No

Serology or Viral Screen tests include - HepB surface antigen (HBsAg), Hep C antibody (anti-HCV), HIV AG/Ab, CMV IgG, Hep B total core antibody (Anti-HBc), Toxoplasma IgG, HTLV 1 and 2, Syphilis total antibody, EBV nuclear antigen, Measles IgG, Varicella IgG, HSV IgG

8

Not Applicable/Not Tested

9

Not Known

Bone Marrow Transplant (BMT) Serology or Viral Screen Date

Date the patient underwent a BMT Serology or Viral Screen

ccyymmdd

N/A

N/A

R

N/A

Bone Marrow Transplant (BMT) Serology or Viral Screen Results

Record the results for the BMT Serology or Viral Screen performed

Code List

1

Positive

R

N/A

2

Negative

Clinical Comments on Positive BMT Serology or Viral Screen Results

Record in free text any clinical comments on positive results of the BMT Serology or Viral Screen if required

max an50

N/A

N/A

R

N/A

Childhood - Stem Cell Transplantation

Core - Treatment - Stem Cell Transplantation.  To be completed for all cases, where applicable   (One occurrence of this group per core treatment)

Organisation Site Code - Place where Stem Cell Transplantation was Performed

Record the Organisation Code of the Organisation where the stem cell transplantation was performed

See Organisation Code - LHB/Trust Site Code

N/A

N/A

R

N/A

Childhood - Principal Treatment Centre.  To carry treatment details for the patients Principal Treatment Centre

Childhood Principal Treatment Centre

Record the patients nominated Childrens Principal Treatment Centre (PTC), whether they have chosen to have treatment at the PTC. If the service is integrated between two PTC's, record both PTC's

Code List

7A4H1

Noah’s Ark Children's Hospital

M

Childhood Principal Treatment Centre (CT7600)

RBS01

Alder Hey Children's NHS Foundation Trust

Repeating data item as multiples can be recorded

RQ301

Birmingham Children's Hospital NHS Foundation Trust

Shared Care Centre Site Code

Record the organisation where shared care treatment was provided by a local organisation

Code List

7A35L

Morriston Hospital

R

N/A

7A2AG

Glangwili General Hospital

7A1A1

Ysbyty Glan Clwyd

7A1A4

Wrexham Maelor Hospital

7A1AU

Ysbyty Gwynedd

EN

Shared Care Provider in England

NA

Not Applicable

Childhood - Neuroblastoma

Childhood - Diagnosis - Neuroblastoma.  To carry additional diagnostic details for Neuroblastoma for Childhood

Life Threatening Symptoms at Presentation

Record if there were any life threatening symptoms at presentation

Code List

Y

Yes

R

Life Threatening Symptoms at Presentation (CT7070)

N

No

Childhood - Site Specific Staging - Neuroblastoma.  To carry site specific staging details for Neuroblastoma for Childhood

International Neuroblastoma Risk Group (INRG) Staging System

The International Neuroblastoma Risk Group Staging System (INRGSS) was designed for the International Neuroblastoma Risk Group (INRG) pre-treatment classification system.  Unlike the INSS, the INRGSS uses the results from imaging tests taken before surgery.   It does not include surgical results or spread to lymph nodes to determine the stage.   Knowledge regarding the presence or absence of image defined risk factors (IDRF) are required for this staging system.

Code List

L1

Stage L1

M

International Neuroblastoma Risk Group (INRG) Staging System (CT7050)

L2

Stage L2

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

M

Stage M

MS

Stage MS

Childhood - Laboratory Results - Neuroblastoma.  To carry laboratory details for Neuroblastoma for Childhood

Urine VMA/Creatinine Ratio

Urinary vanillylmandelic acid (VMA) used to evaluate catecholamine production, useful in the diagnosis of pheochromocytoma and neuroblastoma and in confirmation of elevated catecholamine levels

max n2 n1

N/A

N/A

R

Urine VMA/Creatinine Ratio (CT7090)

Range 0.0-10.0

Childhood - Pathology - Neuroblastoma.  To carry additional pathology details for Childhood

Molecular Diagnostics Code

Chromosomal or genetic markers associated with the brain tumour

Code List

53

Evidence of MYC/MYCN amplification

R

Molecular Diagnostics Code (pBA3070)

Note: This data item is part of the site-specific standard for Central Nervous System. Whilst that Standard has additional codes, only the adjacent codes are applicable to the Childhood patient group specific standard

54

Evidence of MYC/MYCN normal copy number

Childhood - Medulloblastoma

Childhood - Site Specific Staging - Medulloblastoma.  To carry site specific staging details for Medulloblastoma for Childhood

Chang Staging System Stage

Chang staging is now a standard staging procedure for Medulloblastoma, CNS PNET, ATRT, ependymoma and CNS germ cell tumours

Code List

M0

No evidence of metastatic disease

M

Chang Staging System Stage (CT6560 )

M1

Microscopic tumour cells found in CSF

M2

Gross nodular seeding in cerebellum, cerebral subarachnoid space, or in the third or fourth ventricles

M3

Gross nodular seeding in spinal subarachnoid space

M4

Metastasis outside cerebrospinal axis

Childhood - Germ Cell CNS Tumours

Childhood - Laboratory Results - Germ Cell CNS Tumours.  To carry laboratory details for Germ Cell CNS Tumours for Childhood

Alpha Fetoprotein (Cerebrospinal Fluid)

Maximum level of alpha feto protein in the cerebro spinal fluid at diagnosis. AFP units recorded in kU/l (values > 100,000 are recorded.

max n8

N/A

N/A

R

Alpha Fetoprotein (Cerebrospinal Fluid) (CT6530)

(Measured only for CNS germ cell tumours)

(0-99999999)

Beta Human Chorionic Gonadotropin (Cerebrospinal Fluid)

Maximum CSF level of HCG at diagnosis in IU/l.

max n8

N/A

N/A

R

Beta Human Chorionic Gonadotropin (Cerebrospinal Fluid) (CT6550)

(Measured only for CNS germ cell tumours)

(0-99999999)

Childhood - Renal Tumours

Childhood - Site Specific Staging - Wilms Tumour.  To carry site specific staging details for Wilms Tumour for Childhood

Wilms Tumour Stage

Stage is determined by the results of the imaging studies and both the surgical and pathologic findings at nephrectomy

Code List

1

Stage 1

M

Wilms Tumour Stage (CT6330)

2

Stage 2

3

Stage 3

4

Stage 4

5

Stage 5

Childhood - Tumour Details - Renal Tumours.  To carry additional tumour details for Renal Tumours for Childhood

Risk Classification (Pathological) After Immediate Nephrectomy

Classification and timing of surgery determine histological risk

Code List

F

Favourable

R

Risk Classification (Pathological) After Immediate Nephrectomy (CT6680)

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

U

Unfavourable

Risk Classification (Pathological) After Pre-Operative Chemotherapy

Classification after pre-operative chemotherapy determines histological risk

Code List

L

Low

R

Risk Classification (Pathological) After Pre-Operative Chemotherapy (CT6340)

I

Intermediate

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

H

High

Childhood - Pathology - Renal Tumours (Paediatric Kidney).  To carry additional pathology details for Childhood

Tumour Rupture

Integrity of tumour margins based on pathologist’s assessment

Code List

Y

Yes

R

Tumour Rupture (pCT6610)

N

No

X

Not stated

Anaplastic Nephroblastoma

Is there evidence of anaplasia, focal or diffused, based on established pathological classification

Code List

F

Focal

R

Anaplastic Nephroblastoma (pCT6620)

D

Diffused

U

Uncertain

Perirenal Fat Invasion

Are there areas of perineal fat suspected for tumour infiltration

Code List

Y

Yes

R

Perirenal Fat Invasion (pCT6630)

N

No

U

Uncertain

Renal Sinus Invasion

Is there evidence of invasion of renal sinus by tumour

Code List

Y

Yes

R

Renal Sinus Invasion (pCT6640)

N

No

U

Uncertain

Renal Vein Tumour

Is there evidence of tumour thrombus in the renal vein

Code List

Y

Yes

R

Renal Vein Tumour (pCT6650)

N

No

U

Uncertain

Viable Tumour at Resection Margin

If the resection margins are involved, is there evidence of viable tumour at the resection margin

Code List

V

Viable

R

Viable Tumour at Resection Margin (pCT6680)

N

Non-viable

X

Not applicable

Tumour Local Stage (Pathological)

Local stage of the tumour as assessed by Pathologist.   Classification system used is International Society of Paediatric Oncology (SIOP)

Code List

1

Stage I

R

Tumour Local Stage (Pathological) (pCT6670)

2

Stage II

3

Stage III

Childhood - Hepatoblastoma

Childhood - Site Specific Staging - Hepatoblastoma.  To carry site specific staging details for Hepatoblastoma for Childhood

Pretext Staging System Stage

Pretext 1-4 refers to sectors of liver involved

Code List

1

Stage 1: Tumour involves only 1 quadrant

M

Pretext Staging System Stage (CT6500)

2

Stage 2: Tumour involves 2 adjoining quadrants; 2 adjoining sections free

3

Stage 3: Tumour involves 3 adjoining quadrants; only 1 quadrant free or 2 non-adjoining quadrants free

4

Stage 4: Tumour involves all 4 quadrants

9

Not Known

Pretext Annotation Factors

Additional Pretext staging used to describe the annotation factors relating to the liver

Code List

V

Extension' into the vena cava and/or all three hepatic veins

M

Pretext Annotation Factors (CT7500)

P

Extension' into the main and/or both left and right branches of the portal vein

E

Extra-hepatic disease

M

Presence of distant metastases

C

Caudate lode

F

Multiple tumour nodules

N

Lymph node involvement

R

Rupture

Z

None

Childhood - Retinoblastoma

Childhood - Site Specific Staging - Retinoblastoma.  To carry site specific staging details for Retinoblastoma for Childhood

International Staging System for Retinoblastoma

The international staging system for intraocular and extraocular retinoblastoma

Code List

0

Stage 0: Patients treated conservatively, grouped according to intraocular classification

M

International Staging System for Retinoblastoma (CT6800)

1

Stage 1: Eye enucleated, completely resected histologically

2

Stage 2: Eye enucleated, microscopic residual tumour

3

Stage 3: Regional extension

(a) Overt orbital disease

(b) Pre-auricular or cervical lymph node extension

4

Stage 4: Metastatic disease

(a) Haematogenous metastasis, 1 Single lesion, 2 Multiple lesions

(b) CNS extension, 1 Prechiasmatic lesion, 2 CNS mass, 3 Leptomeningeal disease

Childhood - Tumour Details - Retinoblastoma.  To carry additional tumour details for Retinoblastoma for Childhood  (Multiple occurrences can be added for left and right)

Retinoblastoma Assessment Laterality

The laterality for which the retinoblastoma details were recorded

Code List

L

Left eye

R

Retinoblastoma Assessment Laterality (CT6780)

R

Right eye

International Classification for Intraocular Retinoblastoma

The intraocular classification for retinoblastoma as approved by the international community

Code List

A

Group A

R

International Classification for Intraocular Retinoblastoma (CT6790)

Small tumour away from the foveola and disc:

-Tumours less than 3 mm in greatest dimension confined to the retina, and

- Located at least 3mm from the foveola and 1.5 mm from the optic disc

B

Group B

All remaining tumours confined to the retina:

- All tumours confined to the retina not in group A

- Subretinal fluid (without subretinal seeding) less than 3 mm from the base of the tumour

C

Group C

Local subretinal fluid or seeding:

- Subretinal fluid alone greater than 3mm to less than 6 mm from the tumour

- Vitreous seeding or subretinal seeding less than 3 mm from tumour

D

Group D

Diffuse subretinal fluid or seeding:

- Subretinal fluid alone greater than 6 mm from the tumour

- Vitreous seeding or subretinal seeding greater than 3 mm from tumour

E

Group E

Presence of one or more of these poor prognosis features:

- Greater than 2/3 globe filled with tumour

- Tumour in anterior segment

- Tumour in or on the ciliary body

- Iris neovascularisation

- Neovascular glaucoma

- Opaque media from haemorrhage

- Tumour necrosis with septic orbital cellulitis

- Phthisis bulbi

Childhood - Paediatric Haematology

Childhood - Diagnosis  - Paediatric Haematology.  Record for Paediatric Haematology

Morphology - WHO Classification of Tumours of Haematopoietic and Lymphoid tissues 2017

To use the gold standard classification to record the morphological type of haematopoietic/lymphoid tissue - this is the most reliable method of recording the type of tumour which integrates the diagnosis - to be used as the lead code and translate to other coding systems as required

an6

N/A

N/A

R

N/A

Childhood - Paediatric Myelodysplasia

Childhood - Laboratory Results  - Paediatric Myelodysplasia.  To carry additional tumour details for Paediatric Myelodysplasia for Childhood

Bone Marrow Blasts

Percentage value of Bone Marrow Blasts

max n3

N/A

N/A

R

Bone Marrow Blasts (Bone Marrow Blast Cells Percentage)

Range (%) 0-100

Cellularity

Percentage value of cellularity

max n3

N/A

N/A

R

Cellularity (CT7340)

Range (%) 0-100

DEB Test

Record the outcome of DEB (Diepoxybutane) Test

Code List

P

Positive

R

DEB Test (CT7350)

N

Negative

9

Not Known

Dysplastic Haemopoiesis

Record if the bone marrow produced (Haemopoiesis) is Unilineage, Bilineage or Trilineages dysplastic

Code List

1

Unilineage

R

Dysplastic Haemopoiesis (CT7360)

2

Bilineage

3

Trilineage

Childhood - Diagnosis  - Paediatric Myelodysplasia.  To carry diagnostic details for Paediatric Myelodysplasia for Childhood

Paediatric Myelodysplasia

Record the Paediatric Myelodysplasia clinical findings at diagnosis

Code List

1

De Novo MDS

R

Paediatric Myelodysplasia (CT7260)

2

Refractory Cytopenia

(Repeating data item - more than one finding may be chosen)

3

Refractory Cytopenia with Ringed Sideroblasts

4

Refractory Cytopenia with Excess Blasts

5

RAEB in Transformation

Underlying Disease associated with MDS

Record any underlying disease associated with MDS at diagnosis

Code List

1

IBFMS

R

Underlying Disease associated with MDS (CT7270)

2

Previous Malignancy

(Repeating data item - more than one finding may be chosen)

3

Radiation

4

Toxic Insult

5

Mitochondrial Disorder

6

Other Systematic Disorder

7

Congenital Anomalies

9

No underlying disease

Congenital Anomalies

Record any congenital anomalies associated with MDS at diagnosis

Max an300

N/A

N/A

R

Congenital Anomalies (CT7380)

Myelodysplasia Symptoms at Diagnosis

Record any other Myelodysplasia symptoms present at diagnosis

Code List

1

Consanguinity

R

Myelodysplasia Symptoms at Diagnosis (CT7310)

2

Organomegaly at Diagnosis

(Repeating data item - more than one finding may be chosen)

3

Lymphadenopathy at Diagnosis

4

Severe Infections prior to Diagnosis

5

Immunodeficiency at Diagnosis

IPSS-R (Myelodysplasia)

The Revised International Prognostic Scoring System (IPSS-R) for Myelodysplastic Syndromes Risk Assessment Calculator is derived from Haemoglobin, Absolute Neutrophil Count, Platelets and Bone Marrow Blasts.

mx n1.n1

N/A

N/A

R

IPSS-R (Myelodysplasia) (HA9000)

Refer to User Guide for more information

Childhood - Acute Lymphoblastic Leukaemia (ALL)

Childhood - Laboratory Results  - Acute Lymphoblastic Leukaemia (ALL).  To carry additional tumour details for Acute Lymphoblastic Leukaemia (ALL) for Childhood

White Blood Cell Count (Highest Pre Treatment)

Highest white blood cell count pre-treatment (x10⁹ per litre).  

max n3.n1

N/A

N/A

R

White Blood Cell Count (Highest Pre Treatment) (HA8150)

Range 0.0 to 999.9

Cytogenetic Risk Code

Cytogenetic analysis of bone marrow (preferably) or blood sample

Code List

F

Favourable

R

N/A

A

Adverse

I

Intermediate

N

No Result

O

Other

Cytogenetics Subsidiary Comment

Description of cytogenetic findings

max an50

N/A

N/A

R

Cytogenetics Subsidiary Comment (CT6240)

Post Induction MRD (ALL Response)

Percentage of leukaemic cells present at the end of Induction (Day 28 Bone Marrow), Minimal Residual Disease (MRD)

Code List

1

0%

M

Post Induction MRD (CT7700)

2

<0.01%

3

<0.1%

4

<1%

5

<5%

6

>=5%

9

Unknown

Childhood - Diagnosis  - Acute Lymphoblastic Leukaemia (ALL).  To carry additional Diagnosis details for Acute Lymphoblastic Leukaemia (ALL) for Childhood

Extramedullary Disease

Site/s of disease identified outside bone marrow, including presence of blasts within CSF (more than one option can be recorded)

Code List

1

CNS1 (without blasts)

M

Extramedullary Disease (HA8270)

2

CNS2 (<5WBC in the CSF with blasts)

3

CNS3 (>WBC in the CSF with blasts

4

Testes

9

Other

Childhood  - Acute Lymphoblastic Leukaemia (ALL).  To carry additional tumour details for Acute Lymphoblastic Leukaemia (ALL) for Childhood

Mixed Lineage Leukaemia Gene (MLL) Status

Record the gene status for the patient

Code List

1

Rearranged

R

N/A

2

Normal

X

Not stated

BCR-ABL Gene Rearrangement

Record the BCR-ABL gene rearrangement status.  

Code List

P

Present

R

N/A

This is recorded at the time of bone marrow, at diagnosis

N

Not present

9

Not Known

Childhood - Acute Myeloid Leukaemia (AML)

Childhood - Laboratory Results  - Acute Myeloid Leukaemia (AML).  To carry additional tumour details for Acute Myeloid Leukaemia (AML) for Childhood

White Blood Cell Count (Highest Pre Treatment)

Highest white blood cell count pre-treatment (x10⁹ per litre).  

max n3.n1

R

White Blood Cell Count (Highest Pre Treatment) (HA8150)

Range 0.0 to 999.9

Cytogenetic Risk Code

Cytogenetic analysis of bone marrow (preferably) or blood sample

Code List

F

Favourable

R

N/A

A

Adverse

I

Intermediate

N

No Result

O

Other

Cytogenetics Subsidiary Comment

Description of cytogenetic findings

max an50

R

Cytogenetics Subsidiary Comment (CT6240)

Post Induction MRD (AML Response)

Percentage of leukaemic cells present at the end of Minimal Residual Disease (MRD) Induction following 2 cycles of chemotherapy

Code List

1

0%

M

Post Induction MRD (CT7700)

2

<0.01%

3

<0.1%

4

<1%

5

<5%

6

>=5%

9

Unknown

Childhood - Diagnosis  - Acute Myeloid Leukaemia (AML).  To carry additional Diagnosis details for Acute Myeloid Leukaemia (AML) for Childhood

European Leukaemia NET (ELN) Genetic Risk (Acute Myeloid Leukaemia)

Cytogenetic and molecular analysis of bone marrow (preferably) or blood

Code List

F

Favourable

R

European Leukaemia NET (ELN) Genetic Risk (Acute Myeloid Leukaemia) (HA9200)

I

Intermediate

A

Adverse

N

No results

FAB Classification

FAB Classification of AML used during diagnosis of acute myeloid leukaemia (AML)

Code List

M0

Undifferentiated acute myeloblastic leukaemia

R

FAB Classification (CT7160)

M1

Acute myeloblastic leukaemia with minimal maturation

M2

Acute myeloblastic leukaemia with maturation

M3

Acute promyelocytic leukaemia

M4

Acute myelomonocytic leukaemia

M4EOS

Acute myelomonocytic leukaemia with eosinophilia

M5

Acute monocytic leukaemia

M6

Acute erythroid leukaemia

M7

Acute megakaryocytic leukaemia

Paediatric Cytogenetic/ Molecular Genetic Risk Group

Risk groups for ages 0-18 - cytogenetic and molecular genetic abnormalities

Code List

1

Good Risk

R

Paediatric Cytogenetic/ Molecular Genetic Risk Group (CT7170)

2

Intermediate Risk

3

Poor Risk

9

Not Known

AML Risk Factors

Record if any of these risk factors are present in a patient at diagnosis

Code List

1

De Novo 

R

AML Risk Factors (CT7180)

2

High Risk MDS

3

Secondary AML

Extramedullary Disease

Site/s of disease identified outside bone marrow, including presence of blasts within CSF (more than one option can be recorded)

Code List

1

CNS1 (without blasts)

M

Extramedullary Disease (HA8270)

2

CNS2 (<5WBC in the CSF with blasts)

3

CNS3 (>WBC in the CSF with blasts

4

Testes

9

Other

Cytogenetic Marker

Code List

01

t(8:21)(q22;q22.1); RUNX1-RUNX1T1 (9896/3)

R

N/A

02

inv(16)(p13.1q22) or t(16;16)(p13, 1;q22); CBFB-MYH11(9871/3)

03

PML-RARA (9866/3)

04

t(9;11)(p21 .3;q23.3); KMT2A-MLLT3 (9897/3)

Specify relevant cytogenetic marker

05

t(6;9)(p23;q34.1); DEK-NUP214 (9865/3)

(this is related to morphology from WHO classification)

06

inv(3)(q21.3q26.2) or (t3;3)(q21.3;q26.2); GATA2, MECOM (9869/3)

07

t(1;22)(p13.3;q13.1); RBM15-MKL1 (9911/3)

08

AML with BCR-ABL1 (9912/3)

09

AML with mutated NPM1 (9877/3)

10

AML with biallelic mutation of CEBPA (9878/3)

11

AML with mutated RUNX1 (9879/3)

Cytogenetic Marker - Other

Specify the Other Cytogenetic Marker

max an50

N/A

N/A

R

N/A

Note: This is only required if the marker is not one of those listed in data item Cytogenetic Marker

Molecular Genetic Results - FLT-3 and ITD

Specify the molecular genetic results for FLT-3 and ITD

Code List

1

Positive

R

N/A

2

Negative

Molecular Genetic Results - NPM1

Specify the molecular genetic results for NPM1

Code List

1

Positive

R

N/A

2

Negative

Childhood - Mixed Phenotype Acute Leukaemia

Childhood - Diagnosis  - Mixed  Phenotype Acute Leukaemia.  To carry diagnostic details for Mixed Phenotype Acute Leukaemia for Childhood

Mixed Phenotype Symptoms (At Diagnosis)

Record if any of the associated symptoms were present at diagnosis

Code List

1

Hepatomegaly

R

Mixed Phenotype Symptoms (At Diagnosis) (CT7200)

2

Splenomegaly

(Repeating data item - more than one finding may be chosen)

3

Lymphadenopathy 

4

Mediastinal Mass

EGIL Score

The EGIL Score (European Group for the Immunological Classification of Leukaemia) assigns score points to major antigens to determine if certain lineage is present

Code List

1

2 - Points

R

EGIL Score (CT7240)

2

1 - Point

3

0.5 - Point

CD19 Status

Record the CD19 status.  

Code List

P

Present

R

N/A

Morphology combined with CD19 status is used to inform decision on type of chemotherapy treatment

N

Not present

9

Not Known

Childhood - Chronic Myeloid Leukaemia (CML)

Childhood - Chronic Myeloid Leukaemia (CML).  To carry additional details for CML for Childhood

Primary Induction Failure

Did the patient fail to achieve morphological remission after induction chemotherapy

Code List

Y

Yes

R

Primary Induction Failure (CT7110)

N

No

9

Not known

Sokal Index (Chronic Myeloid Leukaemia)

Index derived from age at diagnosis, spleen size, platelet count, myeloblasts %

max n1.n1

N/A

N/A

D

Sokal Index (Chronic Myeloid Leukaemia) (HA8010)

Blood Myeloblasts Percentage

Myeloblasts as percentage of total white cells. 

max n3

N/A

N/A

D

N/A

%. Range 0-100

Note: This is a derived data item where the absolute value of myeloblasts /white cell count x 100 = % blood myeloblasts  

Blood Basophils Percentage

Basophils as percentage of total white cells.

max n3

N/A

N/A

D

N/A

%. Range 0-100

Note: This is a derived data item where the absolute value of basophils /white cell count x 100 = % blood basophils

Blood Eosinophils Percentage

Eosinophils as percentage of total white cells.  

max n3

N/A

N/A

D

N/A

%. Range 0-100

Note: This is a derived data item where the absolute value of eosinophils /white cell count x 100 = % blood eosinophils

BCR Level ABL Ratio at 12 months

Record the BCR Level ABL Ratio at 12 months

Record %  with  4 decimal places e.g., 0.0032 or Undetectable

N/A

N/A

R

N/A

Note: Undetectable must be recorded as text as clinically it is not the same as 0%

Molecular Response at 12 months

Record the result of the molecular response at 12 months

max n3

N/A

N/A

R

N/A

%. Range 0-100

Treatment Response

To indicate the patient’s response to treatment

Code List

99

NE - Non Evaluable

R

N/A

07

BC - Blast Crisis

08

AD - Accelerated Disease

09

CP - Chronic Phase bcr/abl PCR > 0.1%

10

LMR - Loss of MR3

11

MR3 - Molecular Response 3 - bcr/abl PCR <0.1%

12

MR4 - Molecular Response 4 - bcr/abl PCR <0.01%

13

MR5 - Molecular Response 5 - bcr/abl PCR <0.001%

Childhood - Non Hodgkins Lymphoma (NHL)

Childhood - Site Specific Staging  - Non Hodgkins Lymphoma (NHL).  To carry site specific staging details for Non-Hodgkins Lymphoma (NHL) for Childhood

Murphy (ST JUDE) Stage

The St Jude Children's Research Hospital model (Murphy Staging), which separates patients on the basis of limited versus extensive disease. (http://www.cancer.gov/cancertopics/pdq/treatment)

Code List

1

Stage 1

M

Murphy (ST JUDE) Stage (CT6250)

2

Stage 2

Note: Associated information is recorded in Core – Site Specific Staging Section

3

Stage 3

4

Stage 4

Childhood - Molecular and Biomarkers - Somatic Testing for Targeted Therapy and Personalised Therapy  - Non Hodgkins Lymphoma (NHL).  To carry molecular and biomarker result details for Non-Hodgkins Lymphoma (NHL) for Childhood

ALK Fusion Status for ALCL

The Anaplastic Lymphoma Kinase (ALK) protein is expressed in a subset of ALCL due to underlying gene fusion events.   Its presence or absence distinguishes prognostically important subsets of this diagnosis

Code List

1

Positive

M

ALK Fusion Status for ALCL (CT6260)

(Non Hodgkins Lymphoma)

2

Negative

3

Indeterminate/Test Failed

8

Not Applicable (Not Tested)

9

Not Known

Childhood - Hodgkins Lymphoma

Childhood - Site Specific Staging  - Hodgkins Lymphoma. To carry site specific staging details for Hodgkins Lymphoma for Childhood

Ann Arbor Stage

Staging based on location of detected disease

Code List

1

I = One region of lymph nodes, or spleen or thymus or Waldeyer's ring enlarged

M

Ann Arbor Stage (HA8280)

2

II = 2 regions of lymph nodes enlarged on same side of diaphragm

3

III = lymph nodes enlarged on both sides of diaphragm

4

IV = disease outside lymph nodes e.g., liver, bone marrow

Childhood - Diagnosis  - Hodgkins Lymphoma.  To carry additional diagnosis details for Hodgkins Lymphoma for Childhood

Ann Arbor Symptoms

Additional stage designation based on presence or absence of specific symptoms

Code List

A

No symptoms

M

Ann Arbor Symptoms (HA8290)

One occurrence per core staging - collected at Diagnosis

B

Presence of any of the following: unexplained persistent or recurrent fever (greater than 38°C/101.5°F), drenching night sweats, unexplained weight loss of 10% or more within the last 6 months

Ann Arbor Extranodality

Additional staging designation based on extranodal involvement

Code List

E

E - Extranodal involvement

M

Ann Arbor Extranodality (HA8300)

Note:

For Primary Nodal Lymphoma: Code E if there is involvement of a single extranodal site by contiguous spread (i.e. directly adjoining) from the known nodal group.

For Primary Extranodal Lymphoma: Code E if there is a single extranodal lesion with or without lymphatic involvement in the draining area (e.g., a thyroid lymphoma with draining cervical lymph node involvement = IIE)

The designation of Stage IV for nodal disease implies disseminated disease involving (distant) extranodal sites.  Multiple extranodal deposits should be considered Stage IV and E should not be used.  However by convention, involvement of the bone marrow, liver, lung, pleura and CSF are always considered Stage IV even if the disease is isolated to that organ.

0

No Extranodal involvement

Erythrocyte Sedimentation Rate (ESR)

Record the ESR at time of diagnosis

n3

N/A

N/A

R

N/A

mm/hr

Childhood - Sarcoma - Osteosarcoma

Childhood - Diagnosis  - Sarcoma - Osteosarcoma.  To carry diagnosis details for Osteosarcoma for Childhood

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)

Code List

Z639

Cranium

R

Sarcoma Tumour Site (Bone) (SA11000)

Z649

Face

Note:

Z659

Jaw

i. 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.  

Z663

Cervical Spine

Z664

Thoracic Spine

ii. Use Cranium (Z639) for instances of Sarcoma of the Skull

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

Ileum

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.

Code List

PR

Proximal

R

Sarcoma Tumour Subsite (Bone) (SA11010)

This gives a more details location of the tumour and should be recorded by speciality centres treating the patient.

DS

Distal

DP

Diaphyseal (Middle)

TO

Total

OO

Other

NK

Not Known

Childhood - Sarcoma - Ewings

Childhood - Diagnosis  - Sarcoma - Ewings.  To carry diagnosis details for Ewings for Childhood

Sarcoma Tumour Site (Bone)

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

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

Z699

Humerus

Z709

Radius

Note:

Z719

Ulna

i. 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.  

Z724

Carpal

Z732

Metacarpal

ii. Use Cranium (Z639) for instances of Sarcoma of the Skull

Z733

Thumb

Z742

Finger

Z746

Sternum

Z751

Ileum

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.

Code List

PR

Proximal

R

Sarcoma Tumour Subsite (Bone) (SA11010)

This gives a more details location of the tumour and should be recorded by speciality centres treating the patient.

DS

Distal

DP

Diaphyseal (Middle)

TO

Total

OO

Other

NK

Not Known

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

Childhood - Laboratory Results  - Ewings.  To carry additional Laboratory details for Ewings for Childhood

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

Childhood - Sarcoma - Other Soft Tissue Site (excluding Rhabdomyosarcoma)

Childhood - Diagnosis  - Sarcoma - Other Soft Tissue Site (excluding Rhabdomyosarcoma).  To carry diagnosis details for Other Soft Tissue Sites  for Childhood

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/ICD02 sites)

Code List

Z272

Stomach

R

Sarcoma Tumour Site (Soft Tissue) (SA11080)

Z301

Liver

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.   

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 details location of the tumour and should be recorded by 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

Childhood - Sarcoma - Rhabdomyosarcoma and Other Soft Tissue Sarcomas

Childhood - Diagnosis - Rhabdomyosarcoma and Other Soft Tissue Sarcomas.  To carry diagnosis details for Rhabdomyosarcoma and Other Soft Tissue Sarcomas for Childhood

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. 

Code List

1

Group 1 - Primary Complete Resection

R

IRS Post Surgical Group (CT6350)

2

Group 2 - Microscopic residual disease or primary complete resection with (completely resected) lymph node involvement

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

3

Group 3 - Macroscopic residual disease

4

Group 4 - Distant Metastases

IRS Post Surgical Group Date

The date on which the IRS Post Surgical Group was recorded

ccyymmdd

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. 

Code List

F

Favourable Sites - Orbit, Genitourinary non bladder prostate, Non-parameningeal Head and Neck

R

Rhabdomyosarcoma Site Prognosis Code (CT6370)

U

Unfavourable Sites - all other sites of disease

Childhood - Laboratory Results  - Rhabdomyosarcoma and Other Soft Tissue Sarcomas.  To carry additional Laboratory details for Rhabdomyosarcoma and Other Soft Tissue Sarcomas for Childhood

Cytogenetics for Alveolar Rhabdomyosarcoma

Presence of a specific cytogenetic abnormality.

Code List

P

Fusion positive

M

Cytogenetics for Alveolar Rhabdomyosarcoma (CT6360)

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

N

Fusion negative

X

Non informative

9

Not known (Not available)

Childhood - Treatment – Children’s Cancer and Leukaemia Group (CCLG) Guidelines.  To carry treatment details for the Children’s Cancer and Leukaemia Group (CCLG)

Treated According to CCLG Guidelines

Record whether a patient was treated according to the Children’s Cancer and Leukaemia Group Guidelines.

Code List

Y

Yes

R

Treated According to CCLG Guidelines (CT7000)

Choose "Not Applicable" where there is a Clinical Trial open or no guideline is available.

N

No

9

Not Known

Note: Of the adjacent codes Not Applicable is not present in COSD. This has been added here to provide greater granularity.

8

Not Applicable

CCLG Guideline Name

Record the  name of the Children’s Cancer and Leukaemia Group Guideline used

Max an100

N/A

N/A

R

CCLG Guideline Name (CT7010)

Patient - Fertility Information  (Multiples can be added through pathway)

Fertility Preservation Assessment Undertaken

Record if the patient underwent a fertility preservation assessment

Code List

01

Yes

R

N/A

02

No

Reason  No Assessment Undertaken

Record the reason why No fertility assessment was undertaken

Code List

01

Not required/not appropriate

R

N/A

02

Unable to assess due to clinical urgency to commence treatment

Note: This data item is only required where Fertility Preservation Assessment Undertaken is recorded as No.

03

Offered but declined - patient preference

04

Not offered

09

Not known

Fertility - Point in Pathway

The point in the pathway when fertility services was allocated

Code List

91

Point of Suspicion

R

N/A

01

Initial cancer diagnosis

02

Start of treatment

03

During treatment

04

End of treatment

05

Diagnosis of recurrence

06

Transition to palliative care

07

Prehabilitation 

08

Late onset - consequence of cancer

98

Other

Date referred to Wales Fertility Institute

Record the date that the patient was referred to the Wales Fertility Institute

ccyymmdd

N/A

N/A

O

N/A

Type of Fertility Preservation Procedure Performed

Record the type of fertility preservation procedure that was performed

Code List

01

Sperm Collection

R

N/A

02

Egg Collection

03

Testicular Biopsy

04

Ovarian Biopsy

05

Not Done

Patient - Clinical Trials  (Multiples can be added through pathway)

Patient Trial Status*

An indication of whether a patient is taking part in a clinical trial

Code List

01

Patient approached, consented to and entered clinical trial

R

Patient Trial Status (Cancer) (CR1290)

02

Patient approached, but declined clinical trial

Note: Of the adjacent codes Patient not approached/Did not meet trial criteria and No trial available  are not present in Core. They have been added here to provide greater granularity.

03

Patient approached and consented, but failed screening

04

Patient not approached/Did not meet trial criteria

09

Not Known (Not Recorded)

99

No Trial available