Reporting Data Item

Definition

Format

Code List (Code)

Code List (Text)

Status

COSD

Additional Imaging Details  (One occurrence per Core Imaging group)

Principal Diagnostic Imaging Type

Indicate the principal imaging procedure undertaken to diagnose the tumour.

Note: PET Scan includes PET-CT Scan

Code List

01

CT scan

R

Principal Diagnostic Imaging Type (BA3050)

02

MRI scan

03

PET scan

Lesion Location
(Radiological)

Radiologically determined anatomical location of lesion (largest lesion if more than one) or where centred. This is recorded prior to treatment.

Code List

01

Frontal lobe

R

Lesion Location
(Radiological) (BA3000)

02

Temporal lobe

03

Parietal lobe

04

Occipital lobe

05

Pineal region

06

Hypothalamic

07

Basal ganglia/thalamic

08

Cerebellar

09

Midbrain

10

Pons

11

Medulla

12

Fourth Ventricle

13

Third Ventricle

14

Lateral Ventricle

15

Parasagittal/parafalcine dura

16

Posterior fossa convexity dura

17

Convexity dura

18

Petrous temporal bone

19

Orbital roof

20

Skull vault

21

Scalp

22

Anterior cranial fossa

23

Middle cranial fossa

25

Infratemporal fossa

26

Pterygopalatine fossa

27

Anterior clinoid dura

28

Sphenoid wing dura

29

Subfrontal dura

30

Suprasellar dura

31

Clival dura

32

Cavernous sinus

33

Cerebellopontine angle

34

Jugular bulb

35

Venous angle dura

36

Foramen magnum

37

Cervical Intramedullary

38

Cervical intradural

39

Cervical extradural

40

Cervical bony

41

Thoracic intramedullary

42

Thoracic intradural

43

Thoracic extradural

44

Thoracic bony

45

Lumbar intramedullary

46

Lumbar intradural

47

Lumbar extradural

48

Lumbar bony

98

Other

Number of lesions
(Radiological)

Radiologically determined number of lesions

max n2

N/A

N/A

R

Number of lesions
(Radiological) (BA3020)

Lesion Size
(Radiological)

Radiological estimate in millimetres (mm) of the maximum diameter of the tumour measured prior to treatment (largest lesion if more than one).
Record as "0" to indicate not assessable for diffuse tumours (e.g. gliomatosis cerebri)

max n3.max n2
mm

N/A

N/A

R

Lesion Size (Radiological) (BA3030)

Radiological Tumour Grade

Record the Radiological Tumour grade, as reported by the Radiologist, as this will determine specific diagnosis and treatment
 

Code List

1

Low Grade

R

N/A

2

High Grade

8

Not Applicable

9

Not Recorded

Additional Imaging Details - Relating to all treatment lines (all 3 data items are applicable each time patient has surgery)  (Multiple occurrences could occur as patient progress through pathways)

MRI Scan (Pre Treatment)

Record if a contrast enhanced MRI was carried out prior to surgical treatment

Code List

1

Yes

R

N/A

2

No - Patient refused investigation

3

No - Contraindication to intravenous contrast medium

4

No - Clinically Inappropriate

5

No - Not Applicable

9

Not Recorded

Date of MRI Scan (Pre Treatment)

Record  the date the contrast enhanced MRI scan investigation was carried out prior to surgical treatment

ccyymmdd

N/A

N/A

R

N/A

Enhancing Component Present on Pre-Treatment MRI Imaging

A record to determine if enhancement is displayed on pre-treatment MRI

Note: Only applicable for MRI

If the status of enhancement is unknown, record as 9 - Not Recorded
If no imaging is performed, record as 8 - Not Applicable

Code List

Y

Yes

R

N/A

N

No

8

Not applicable

9

Not recorded

Care Plan (One occurrence per Core Cancer Care Plan group)

MDT Provisional Diagnosis (ICD)

Working diagnosis as defined at MDT where the first definitive treatment is agreed. This is the clinical opinion which may also be informed by biopsy, radiological and/or other investigations

min an4 max an6

N/A

N/A

R

MDT Provisional Diagnosis (ICD) (BA3080)

Intent of Surgery (MDT)

Final assessment of intent of surgery as defined by MDT

Code List

1

Maximal surgical resection (>90% reduction in tumour volume is intended)

R

N/A

2

Partial resection/biopsy or debulking surgery (<90% reduction in tumour volume is intended)

8

Not applicable

9

Not recorded

MDT Details - Additional  MDT Details  (Multiple occurrences of MDT )

Date of Referral to NeuroSurgery MDT

Record  the date the referral was made to the NeuroSurgery MDT

ccyymmdd

N/A

N/A

R

N/A

Additional Diagnosis Details - General  (One occurrence per Core Diagnosis group)

Seizure Presentation (at diagnosis)

Record if the patient has presented with seizures at the time of diagnosis

Code List

Y

Yes

R

N/A

N

No

9

Not recorded

Seen by Neurologist and/or Named Epilepsy Specialist Nurse (ESN)

Record if the patient was seen by a Neurologist and/or named Epilepsy Specialist Nurse (ESN)

Note:
i. A named ESN is a named nurse with expertise in epilepsy management

ii. The patient should be seen by the Neurologist and/or named Epilepsy Specialist Nurse (ESN) within 2 weeks of date of diagnosis.   Record whether the patient was seen regardless of the timeframe.

Code List

1

Named Epilepsy Specialist Nurse (ESN)

R

N/A

2

Neurologist

3

Seen by Both (Neurologist and named ESN)

4

Not Seen

9

Not recorded

Date Seen by Neurologist and/or Named Epilepsy Specialist Nurse (ESN)

Record the date the patient was seen by a Neurologist and/or named Epilepsy Specialist Nurse (ESN)

Note:
i. A named ESN is a named nurse with expertise in epilepsy management

ii. The date should relate to when the patient was first seen by a Neurologist and/or named ESN following diagnosis.  Where the patient was seen on more than one occasion the first date of contact should be recorded.  

ccyymmdd

N/A

N/A

R

N/A

Diagnosis - Low Grade Glioma  (One occurrence per Core Diagnosis group)

Visual Acuity at Presentation

Record the visual acuity at presentation on the patient, this can be a repeating data item

Code List

1

Left - Normal

R

Visual Acuity at Presentation (CT7030)

2

Right - Normal

3

Left - Abnormal

4

Right -Abnormal

9

Not Known

Visual Fields at Presentation

Record the visual fields at presentation on the patient, this can be a repeating data item.

Code List

1

Left - Normal

R

Visual Fields at Presentation (CT7400)

2

Right - Normal

3

Left - Abnormal

4

Right -Abnormal

9

Not Known

Brain/CNS - Treatment Details.  Additional Treatment Summary Details

Type of First Cancer Treatment*

This denotes the first specific treatment modality administered to a patient

Note:
(i) This is required where data item  Cancer Treatment Event Type is recorded as First Definitive Treatment for a New Primary Cancer
(ii) Where the therapy is part of a combined treatment please record each part of the treatment using the adjacent codes. This, along with Core data items Cancer Treatment Event Type and Treatment Start Date (Cancer) will then denote that it is a combined treatment (see National Cancer Data Standards for Wales – User Guide for further information).
(iii) Of the adjacent codes, Supportive Care Only, Watchful Waiting, Patient Died Before Treatment and Not Recorded are not present in Core. These have been added here to provide greater granularity. Whilst the Core data item has additional codes, only the adjacent codes are applicable to the Brain and CNS site-specific standard.

Code List

01

Surgery

R

Cancer Treatment Modality (Registration) (CR2040)

02

Anti-Cancer Drug Regimen (Cytotoxic Chemotherapy)

05

Teletherapy (Beam Radiation excluding Proton Therapy)

27

Supportive Care Only

97

Other Treatment (not listed)

43

Watchful Waiting

21

Biological Therapies (excluding Immunotherapy)

04

Chemoradiotherapy

96

Patient died before treatment

98

All treatment declined

99

Not Recorded

Date of First Cancer Treatment

This denotes the date the Type of First Cancer Treatment was given to the patient.

Note: This is a derived data item from data item Treatment Start Date (Cancer) where data item Cancer Treatment Event Type is recorded as First Definitive Treatment for a New Primary Cancer

ccyymmdd

N/A

N/A

D

N/A

Brain/CNS - Surgery - General  (One occurrence per Core Surgery)

Tumour Location (Surgical)

Surgically determined anatomical location of lesion(s) or where centred

Code List

01

Frontal Lobe

R

Tumour Location (Surgical) (BA3100)

02

Temporal lobe

03

Parietal lobe

04

Occipital lobe

05

Pineal region

06

Hypothalamic

07

Basal ganglia/thalamic

08

Cerebellar

09

Midbrain

10

Pons

11

Medulla

12

Fourth Ventricle

13

Third Ventricle

14

Lateral Ventricle

15

Parasagittal/parafalcine dura

16

Posterior fossa convexity dura

17

Convexity dura

18

Petrous temporal bone

19

Orbital roof

20

Skull Vault

21

Scalp

22

Anterior cranial fossa

23

Middle cranial fossa

25

Infratemporal fossa

26

Pterygopalatine fosse

27

Anterior clinoid dura

28

Sphenoid wing dura

29

Subfrontal dura

30

Suprasellar dura

31

Clival dura

32

Cavernous sinus

33

Cerebellopontine angle

34

Jugular bulb

35

Venous angle dura

36

Foramen magnum

37

Cervical Intramedullary

38

Cervical Intradural

39

Cervical Extradural

40

Cervical bony

41

Thoracic intramedullary

42

Thoracic intradural

43

Thoracic extradural

44

Thoracic bony

45

Lumbar intramedullary

46

Lumbar intradural

47

Lumbar extradural

48

Lumbar bony

98

Other

Biopsy Type

Identify type of biopsy (where performed)

Code List

1

Frame-based stereotactic biopsy

R

Biopsy Type (BA3200)

2

Frameless stereotactic biopsy

3

Open biopsy

4

Percutaneous biopsy

5

Endoscopic biopsy

6

Other biopsy

9

Not Known

Excision or Procedure Type

Identify type of excision or procedure (where performed)

Code List

1

Limited (<50%)

R

Excision or Procedure Type (BA3210)

2

Partial (50%-69%)

3

Subtotal (70-95%)

4

Total Macroscopic

5

Extent Uncertain

6

CSF Division Procedure

9

Not Known

Brain/CNS - Surgery - For Definitive Surgery Only  (One occurrence for Definitive Surgery)

Date of Main (Definitive) Surgery

Record the date of the main (definitive) surgery performed on the patients for treatment of Brain/CNS cancer

ccyymmdd

N/A

N/A

R

N/A

Location Site Code for Organisation for Main (Definitive) Cancer Surgery

Record the hospital where the main (definitive) surgery took place.  

See  Organisation Code - LHB/Trust Site Code

N/A

N/A

R

N/A

Brain/CNS - Surgery - Additional Surgical Data Items  (Multiple occurrences for  Surgery throughout pathway)

Post Surgical MRI Scan

Specify if a contrast enhanced MRI scan was carried out after surgery

Code List

1

Yes

R

N/A

2

No - Patient refused investigation

3

No - Contraindication to intravenous contrast medium

4

No - Clinically Inappropriate

5

No - Not Applicable

9

Not Recorded

Date of Post Surgical MRI Scan

Record the date the contrast enhanced MRI scan investigation was carried out following surgery

ccyymmdd

N/A

N/A

R

N/A

Reduction in Tumour Volume

Record the estimated percentage reduction volume achieved during surgical resection of a tumour as determined by radiology

Note: This should be determined by comparing pre and post operation MRI scans and documented by radiologist.   Reduction volume percentage should be clearly documented on the post operative MDT notes as defined by the radiologist and not deduced by audit/clerical staff.  If it is not documented then this should be discussed with Clinician/Radiologist. Patients not undergoing both pre and post operation MRI scans should be recorded as Not Applicable

Code List

1

<50%

R

N/A

2

50-89%

3

90-100%

8

Not applicable

9

Not recorded

Resection Status

The Resection Status of the tumour. This is determined at MDT by a combination of surgical history and postop imaging

Code List

1

Complete resection

R

Resection Status (CT7390)

2

Incomplete resection (<1.5 cm2 remaining)

3

Incomplete resection (> 1.5cm2 remaining)

9

Not applicable, biopsy only

Additional Surgery Details - Glioblastoma

Administration of Gliolan (5-ALA)

Record if the patient was given Gliolan (5-ALA) 4-5 hours prior to surgical resection.
This is applicable to cases of glioblastoma only

Code List

1

Yes

R

N/A

2

No

8

Not applicable

3

Contraindication

4

Clinically inappropriate

9

Not recorded

Additional Pathology Details - General  (One occurrence per Pathology Report)

WHO CNS Grade 

Record the WHO CNS Grade - this is a malignancy scale to determine the aggressiveness of tumours and to estimate the prognosis

Code List

1

Grade 1

R

N/A

2

Grade 2

3

Grade 3

4

Grade 4

8

Not applicable (No sample for pathology)

9

Not Recorded

Histopathology Report Complete

Record if all information required in the pathology report is complete. 

Code List

1

Complete 

R

N/A

2

Not Complete

8

Not Applicable

9

Not Recorded

Additional Pathology Details - Molecular analysis.  Further information regarding molecular analysis  (One occurrence per Pathology Report)

Molecular Diagnostics Code

Chromosomal or genetic markers associated with the brain tumour. 
This may involve section of more than one value for each tumour.

Note: The code list is based on the 2016 WHO categories for Molecular Diagnostic Markers.

Code List

06

Evidence of ALK rearrangement

R

Molecular Diagnostics Code (pBA3070 )

07

Evidence of native ALK

08

Evidence of ATRX mutation

09

Evidence of wt ATRX

10

Evidence of BRAF V600E mutation

11

Evidence of wt BRAF

12

Evidence of KIAA1549-BRAF fusion

13

Evidence of BRAF/RAF1 mutations, or fusions involving genes other than KIAA1549

14

Evidence of C11orf95-RELA fusion

15

Evidence of native CC11orf95 and RELA

16

Evidence of amplification or fusion of C19MC locus (chr.19q13.42)

17

Evidence of unaltered C19MC locus (chr.19q13.42)

18

Evidence of CDK4/6 amplification

19

Evidence of CDK4/6 normal copy number

20

Evidence of CDKN2A locus homozygous deletion

21

Evidence of CDKN2A locus normal copy number

22

Evidence of CCND1/2/3 amplification

23

Evidence of CCND1/2/3 normal copy number

24

Evidence of CTNNB1 Mutation

25

Evidence of wt CTNNB1

26

Evidence of amplification of EGFR

27

Evidence of mutation/rearrangement of EGFR

28

Evidence of unaltered EGFR

29

Evidence of EWSR1-FLI1 fusion

30

Evidence of native EWSR1 and FLI1

31

Evidence of FGFR1 mutation/ rearrangement/ fusion

32

Evidence of unaltered FGFR1

33

Evidence of H3F3A/H3F3B (H3.3) K27M mutation

34

Evidence of H3F3A/H3F3B (H3.3) wt K27

35

Evidence of H3F3A/H3F3B (H3.3)G34R/V mutation

36

Evidence of H3F3A/H3F3B (H3.3) wt G34

37

Evidence of HIST1H3B K27M mutation

38

Evidence of HIST1H3B wt K27

39

Evidence of HIST1H3C K27M mutation

40

Evidence of HIST1H3C wt K27

41

Evidence of ID2 amplification

42

Evidence of ID2 normal copy number

43

IDH1 (codon 132) or IDH2 (codon172) mutation identified

44

IDH1 (codon 132)and IDH2 (codon 172) wt confirmed

45

Evidence of KLF4 K409Q and TRAF7 mutations

46

Evidence of wt KLF4 and TRAF7

47

Evidence of MAP2K1 mutation

48

Evidence of wt MAP2K1

49

Evidence of MET amplification

50

Evidence of MET normal copy number

51

Evidence of significant MGMT promoter methylation

52

Evidence of unmethylated MGMT promoter

53

Evidence of MYC/MYCN amplification

54

Evidence of MYC/MYCN normal copy number

55

Evidence of NF1 biallelic loss/mutation

56

Evidence of unaltered NF1

57

Evidence of NF2 biallelic loss/mutation

58

Evidence of unaltered NF2

59

Evidence of NTRK Fusions

60

Evidence of native NTRK

61

Evidence of PTEN Biallelic loss/mutation

62

Evidence of Unaltered PTEN

63

Evidence of SDHB or SDHD mutation

64

Evidence of wt SDHB and SDHD

65

Evidence of SHH pathway activation

66

Evidence of normal SHH pathway

67

Evidence of inactivation of SMARCB1 (INI1)

68

Evidence of wt SMARCB1 (INI1)

69

Evidence of inactivation of SMARCA4

70

Evidence of wt SMARCA4

71

Evidence of TERT promoter mutation

72

Evidence of wt TERT promoter

73

Evidence of TP53 mutation

74

Evidence of wt TP53

75

Evidence of TSC1 or TSC2 mutation

76

Evidence of wt TSC1 and TSC2

77

Evidence of VHL mutation

78

Evidence of wt VHL gene

79

Evidence of WNT pathway activation

80

Evidence of normal WNT pathway

81

Evidence of WWTR1- CAMTA1 fusion

82

Evidence of native WWTR1-CAMTA1

83

Evidence of codeletion of chr.1p and chr.19q

84

Evidence of total chr 1p loss but normal copy number of chr.19q

85

Evidence of normal copy number of both chr.1p and chr 19q

86

Evidence of monosomy chr.6

87

Evidence of chr.6 normal copy number

88

Evidence of polysomy chr.7

89

Evidence of chr.7 normal copy number

90

Evidence of loss of chr.10 or chr. 10q

91

Evidence of chr.10 normal copy number

92

Evidence of loss of chr.22 or chr.22q

93

Evidence of chr.22 or chr. 22q normal copy number

98

Other

99

Not known (Not Recorded)

Immunohistochemistry Hormone Expression Type

Hormone expression by immunohistochemistry.
For Pituitary Adenomas only
(Multiple values may be recorded)

Code List

0

Non Functioning

R

Immunohistochemistry Hormone Expression Type (pBA3150 )

1

ACTH

2

LH

3

FSH

4

Alpha-subunit

5

TSH

6

Prolactin

7

Growth Hormone

Additional Pathology Details - Glioma  (One occurrence per Pathology Report)

Molecular Diagnostics Tissue Analysis

Record if molecular diagnostics analysis has been performed on resected or biopsied tissue of patients with a Glioma

This includes analysis for:
combined loss of 1p/19q
IDH mutation
TERT promoter mutation
ATRX loss
CDKN2A/B deletion
Additional genetic and molecular markers as required

Code List

1

Performed

R

N/A

2

Not done/Not Performed

3

Insufficient Sample

9

Not Recorded

Date of Molecular Diagnostics Tissue Analysis

Record the date that the molecular diagnostics tissue analysis was carried out in patients with a Glioma

ccyymmdd

N/A

N/A

R

N/A

Staging - Site Specific Staging - CSF (Cerebrospinal Fluid)   (One occurrence per Core Site Specific Staging group)

Chang Staging System Stage

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

Note: This should be used in conjunction with information in the Site Specific Staging section in Core. Consequently, Core data items Organisation Site Identifier (Site Specific Stage) and Stage Date (Site Specific Stage) should also be recorded if Chang Staging System Stage  is collected

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

Laboratory Results - Germ Cell CNS tumours  (One occurrence per Core - Laboratory Results group)

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.

Note: Measured only for CNS germ cell tumours

max n8
(0-99999999)

N/A

N/A

R

Alpha Fetoprotein (Cerebrospinal Fluid) (CT6530 )

Beta Human Chorionic Gonadotropin (Cerebrospinal Fluid)

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

Note: Measured only for CNS germ cell tumours

max n8
(0-99999999)

N/A

N/A

R

Beta Human Chorionic Gonadotropin (Cerebrospinal Fluid) (CT6550)

Brain/CNS - Oncological Treatment - General   (May be multiple occurrences)

Professional Registration Issuer Code - Consultant (Specialist Neuro-Oncologist)

A code which identifies the professional registration body for the Consultant or Health Care Professional who is responsible for the oncological treatment of the patient

Code List

2

General Dental Council

M

N/A

3

General Medical Council

4

General Optical Council

8

Health and Care Professions Council

9

Nursing and Midwifery Council

Specialist Neuro-Oncologist†

Record the Specialist Neuro-Oncologist managing the patient undergoing oncological treatment

Note: A specialist neuro-oncologist can be defined as:
- Having an interest in Brain/CNS cancer
- Attends at least 50% of weekly neuro-oncology MDT meetings
- Attends at least one national or international neuro-oncology conference every 2 years

See Consultant Code

N/A

N/A

M

N/A

Seen by Specialist Neuro-Oncologist

Record if the patient was seen by a Specialist Neuro-Oncologist

Code List

Y

Yes

R

N/A

N

No

8

Not Applicable

9

Not Recorded

Radiotherapy Course Type

Record the type of course of external beam radiotherapy administered for the treatment of cancer

Code List

1

Radical - RT courses where ≥ 15 fractions are delivered

R

N/A

2

Palliative - the aim is solely to relieve symptoms

3

Chemoradiotherapy - Radical radiotherapy given in combination with chemotherapy either concurrently or sequentially

4

Patient died before radiotherapy treatment

5

Patient refused radiotherapy treatment

8

Not Applicable - no radiotherapy given

9

Not Recorded

Type of SACT

Record the type of course of cytotoxic or biological drugs administered for the treatment of cancer. 

Code List

01

Adjuvant - Chemotherapy given after surgery

R

N/A

02

Neoadjuvant - Therapy given prior to radiotherapy or first definitive surgery to reduce tumour size

04

Palliative - Systemic therapy given for symptom control without curative intent e.g., for patients with metastatic disease at time of diagnosis

05

Chemo-radiotherapy - For curative/radical treatment.  Can be sequential or concurrent with radiotherapy

07

Biological Therapy

94

Patient died before SACT treatment

95

Patient refused SACT treatment

96

Not Applicable - Systemic therapy not given as primary part of therapy

99

Not Recorded

Date Treatment Completed (SACT)

The date cancer treatment course ended

ccyymmdd

N/A

N/A

R

N/A