Cancer Outcomes and Services Data Set - Central Nervous System

Cancer Outcomes and Services Data Set - Central Nervous System

Overview

Due to Covid-19, the implementation date of the Cancer Outcomes and Services Data Set (COSDS) version 9 was deferred until 1 July 2020.

Introduction

The Cancer Outcomes and Services Data Set is a compiled data set which provides the standard for secondary uses information required to support national cancer registration and associated analysis (at local, regional, national and international level), as well as other national cancer audit programmes

The standard and XML Schema consists of:

  • a set of individual data items, with their definitions

  • the assemblage of data items into discrete data sets

  • the means of flowing the data items

  • compilation of the data items into a reconciled and verified data set.

Additionally, the output supports commissioning and service development through provision of relevant information on service delivery and outcomes.

All PATIENTS diagnosed with or receiving cancer treatment in or funded by the NHS in England are covered by the standard. This includes adult and paediatric cancer PATIENTS. The standard applies to all ORGANISATIONS providing Cancer Services within secondary care. It does not apply to general practice ORGANISATIONS.

The Cancer Outcomes and Services Data Set covers diseases as defined by the United Kingdom and Ireland Association of Cancer Registries (UKIACR) as described in the  User Guide  at Appendix A and B.

Unless otherwise specified, the term cancer is used throughout the standard and related documents to cover all conditions registerable by the United Kingdom and Ireland Association of Cancer Registries.

Submission Information

Providers of Cancer Services are required to provide a monthly return on all cancer PATIENTS using the Cancer Outcomes and Services Data Set.

The Cancer Outcomes and Services Data Set  is submitted to the National Cancer Registration and Analysis Service (NCRAS) using the COSDS  XML Schema.

While the core and cancer site specific data sets are shown as separate data sets within the NHS Data Model and Dictionary, the COSDS  XML Schema integrates each core and cancer site specific set of data elements. Documentation provided on the Technology Reference Data Update Distribution (TRUD)  page at: NHS Data Model and Dictionary: DD XML Schemas gives full details of the specification.

For all diagnoses not covered by a cancer site specific data set, only the Core Data Set  should be completed. A full list of diagnoses mapped to the appropriate data set is provided in the National Cancer Registration and Analysis Service   User Guide.

Pathology

From January 2016 Pathology Laboratories across England were mandated through SCCI1521 17/2014, to collect and return structured pathology using the COSDS  XML Schema.

This replaced the current reporting to the National Cancer Registration and Analysis Service  of electronic pathology reports which were then transcribed by the  National Cancer Registration and Analysis Service into the Cancer Registration Reports. This also prevented Cancer Service  teams, for example, Multidisciplinary Teams, Pathway Co-ordinators, duplicating the work, which had been happening as part of their data collection process.

From April 2020, the pathology data can only be collected and submitted using the separate Pathology Data Set  and Pathology XML Schema. Pathology data items have been removed from the main Cancer Outcomes and Services Data Set.

This allows the Cancer Service teams to concentrate on collecting and reporting all the other clinical data required for the Cancer Outcomes and Services Data Set  and the Pathologists to collect and report the pathology items. This will reduce the burden of data collection for the Cancer Service teams and allow for more accurate pathology reporting to be submitted to the National Cancer Registration and Analysis Service.

There will be no requirement for Pathology Laboratories  to double report. Once their Laboratory Information Management Systems (LIMS) are updated to report in the COSDS  XML Schema, all other pathology reporting can cease.

Further Guidance

Further guidance for submission of the Cancer Outcomes and Services Data Set  is provided by the  National Cancer Registration and Analysis Service  at  Cancer Outcomes and Services Dataset.

Mandation

The Mandation column indicates the recommendation for the inclusion of data.

  • M = Mandatory: this data element is mandatory and the technical process (e.g. submission of the data set, production of output etc) cannot be completed without this data element being present

  • R = Required: NHS business processes cannot be delivered without this data element

  • O = Optional: the inclusion of this data element is optional as required for local purposes.

XML Schema

For guidance on the XML Schema constraints, see the Cancer Outcomes and Services Data Set XML Schema Constraints.

For guidance on downloading the XML Schema, see XML_Schema_TRUD_Download.

Specification

IMAGING - CENTRAL NERVOUS SYSTEM (CNS)

To carry imaging details for Central Nervous System (CNS) cancer.One occurrence of this group is permitted per Core Imaging.

Mandation

Data Elements

R

LESION LOCATION (RADIOLOGICAL)

R

NUMBER OF LESIONS (RADIOLOGICAL)

R

LESION SIZE (RADIOLOGICAL)

R

PRINCIPAL DIAGNOSTIC IMAGING TYPE

CANCER CARE PLAN - CENTRAL NERVOUS SYSTEM (CNS)

To carry cancer care plan details for Central Nervous System (CNS) cancer.One occurrence of this group is permitted Core Cancer Care Plan.

Mandation

Data Elements

R

PROVISIONAL DIAGNOSIS (ICD)

SURGERY - TREATMENT - CENTRAL NERVOUS SYSTEM (CNS)

To carry surgery details for Central Nervous System (CNS) cancer.One occurrence of this group is permitted per Core Treatment Surgery.

Mandation

Data Elements

R

TUMOUR LOCATION (SURGICAL)

R

BIOPSY TYPE (CENTRAL NERVOUS SYSTEM TUMOURS)

R

EXCISION TYPE (CENTRAL NERVOUS SYSTEM TUMOURS)

SURGERY - TREATMENT: CHILDREN, TEENAGERS AND YOUNG ADULTS (CTYA) - CENTRAL NERVOUS SYSTEM (CNS)

To carry surgery details for Children, Teenagers and Young Adults (CTYA) for Central Nervous System (CNS) cancer.One occurrence of this group is permitted per Core Treatment Surgery.

Mandation

Data Elements

R

RESECTION STATUS

DIAGNOSIS: LOW GRADE GLIOMA - CENTRAL NERVOUS SYSTEM (CNS)

To carry diagnostic Low Grade Glioma details for Central Nervous System (CNS) cancer.One occurrence of this group is permitted per Core Diagnosis.

Mandation

Data Elements

R

VISUAL ACUITY TEST RESULT (AT DIAGNOSIS)

R

VISUAL FIELD TEST RESULT (AT DIAGNOSIS)

SITE SPECIFIC STAGING: CEREBROSPINAL FLUID (CSF) - CENTRAL NERVOUS SYSTEM (CNS)

To carry site specific staging Cerebrospinal Fluid (CSF) details for Central Nervous System (CNS) cancer.One occurrence of this group is required per Core Site Specific Staging.

Mandation

Data Elements

M

CHANG STAGING SYSTEM STAGE

LABORATORY RESULTS: GERM CELL CENTRAL NERVOUS SYSTEM (CNS) TUMOURS CHOICE - CENTRAL NERVOUS SYSTEM (CNS)
Mandation CHOICE 1 - ALPHA FETOPROTEIN

To carry Germ Cell Central Nervous System (CNS) tumour laboratory result details.One occurrence of this group is required per Core Laboratory Results if selected as the choice.

M

ALPHA FETOPROTEIN (CEREBROSPINAL FLUID)

Or
Mandation CHOICE 2 - BETA HUMAN CHORIONIC GONADOTROPIN

To carry Germ Cell Central Nervous System (CNS) tumour laboratory result details.One occurrence of this group is required per Core Laboratory Results if selected as the choice.

M

BETA HUMAN CHORIONIC GONADOTROPIN (CEREBROSPINAL FLUID)

Also Known As

This data set is also known by these names:

Context Alias
Also known as Cancer Outcomes and Services Data Set: Central Nervous System
Full name Central Nervous System Data Set
Short name Central Nervous System