Site specific - Central Nervous System

For the COSD, benign brain cancers are included in the Central Nervous System Data set, although they are excluded from Cancer Waits.

ICD-10 codes C47 and C69 are grouped under Brain/Central Nervous System for Cancer Waits but are excluded from the COSD Central Nervous System data set. For diseases coded under C47 (peripheral nerves and autonomic nervous system) or C69 (eye and adnexa) only the CORE data set needs to be completed.

CNS and CTYA CNS have been separated within this group to form 2 sub sections. It is hoped that this will help make data collection easier and improve ascertainment.

ICD-10 CODES

Note:

• please refer to Appendix A and B for site specific registerable ICD codes for Central Nervous System cancer patients

Retired data items

The following data items have been retired from v10:

• BA3000 – Lesion Location (Radiological)
• BA3020 – Number of Lesions (Radiological)
• BA3030 – Lesion Size (Radiological)
• BA3050 – Principle Diagnostic Imaging Type
• CT7030 – Visual Acuity at Presentation
• CT7400 – Visual Fields at Presentation

This is a child of 'Core - Cancer Care Plan'.

May be up to one occurrence per CORE - Cancer Care Plan (0..1)

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.

This section is a child of ‘CORE - Treatment' and will mandate:

• the date the treatment started
• the treatment modality
• the organisation that provided the treatment

May be up to one occurrence per CORE - Treatment - Surgery (0..1)

Lesion Location (Surgical)

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

Note:

• this data item was renamed on the advice of the NHS Data Model and Dictionary Service, previously ‘Tumour Location (Surgical)’

Biopsy Type

Identify type of biopsy (where performed)

Excision or Procedure Type

Identify type of excision or procedure (where performed)

It is possible that some legacy data may not have all the required mandatory fields. The recommendation is for Trusts to update their data to meet the new requirements and improve/enrich their data submissions, or not upload the legacy data items in the new record (if that data is not available).

This section is a child of ‘Core – Treatment’, and will mandate:

• the date the treatment started
• the treatment modality
• the organisation that provided the treatment

May be up to one occurrence per Core – Treatment – Surgery (0..1)

Resection Status

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

It is possible that some legacy data may not have all the required mandatory fields. The recommendation is for Trusts to update their data to meet the new requirements and improve/enrich their data submissions, or not upload the legacy data items in the new record (if that data is not available).

It is important that ‘where applicable’ all stageable cancers are staged for every case. All site specific staging fields are mandatory and a child of ‘CORE – Site Specific Staging’ Section, and together mandates the collection of:

• the date the sample was taken which provided a positive site specific stage outcome or the MDT where the stage was agreed
• the organisation who carried out the stage
  • this is a ‘required’ data item from v10, but important to collect if known
• the stage itself

The Chang stage is a combination of Cerebrospinal fluid (CSF) and imaging findings and can only be done taking both findings into account. As a result, the section name has been updated in v10.

May be up to one occurrence per Core Site - Specific Staging (0..1)

Chang Staging System Stage

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

This group is for recording germ cell data for CNS tumours, is now a child of CORE - Laboratory Results, and will mandate:

• the date the sample was reported
• the organisation who processed the sample

May be up to one occurrence per CORE - Laboratory Results (0..1)

CNS - Laboratory results - Germ Cell CNS tumours choice - Choice 1 .. 1

CNS - Laboratory results - Germ Cell CNS tumours - Choice 1

End of CNS - Laboratory results - Germ Cell CNS tumours - Choice 1

CNS - Laboratory results - Germ Cell CNS tumours - Choice 2

End of CNS - Laboratory results - Germ Cell CNS tumours - Choice 2

End of CNS - Laboratory results - Germ Cell CNS tumours choice

Note:

• the following data items form a 2-choice menu, if selected at least one of the following choices must be provided (and are mandatory) per ‘CNS - Laboratory Results - Germ Cell CNS Tumours (1..1)’

Choice 1: Alpha Fetoprotein (Cerebrospinal Fluid)

Maximum level of alpha feto protein in the Cerebrospinal Fluid at diagnosis. AFP units recorded in kU/l (values > 100,000 are recorded. (Measured only for CNS germ cell tumours).

Note:

• this has a new data item number in v10, previously CT6530

Choice 2: Beta Human Chorionic Gonadotropin (Cerebrospinal Fluid)

Maximum CSF level of HCG at diagnosis in IU/l. (Measured only for CNS germ cell tumours).

Notes:

• this has a new data item number in v10, previously CT6550

It is possible that some legacy data may not have all the required mandatory fields. The recommendation is for Trusts to update their data to meet the new requirements and improve/enrich their data submissions, or not upload the legacy data items in the new record (if that data is not available).