Cancer Outcomes and Services Data Set - Children Teenagers and Young Adults
Cancer Outcomes and Services Data Set - Children Teenagers and Young Adults
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:
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a set of individual data items, with their definitions
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the assemblage of data items into discrete data sets
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the means of flowing the data items
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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 Update Distribution (TRUD) page at: NHS Data Model and Dictionary 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 DCB1521 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.
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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
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R = Required: NHS business processes cannot be delivered without this data element
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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
REFERRALS - CHILDREN, TEENAGERS AND YOUNG ADULTS (CTYA)
To carry referral details for Children, Teenagers and Young Adults (CTYA) cancer.One occurrence of this group is permitted per Core Referrals and First Stage of Patient Pathway. |
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Mandation |
Data Elements |
R |
DIAGNOSIS - CHILDREN, TEENAGERS AND YOUNG ADULTS (CTYA)
To carry diagnostic details for Children, Teenagers and Young Adults (CTYA) cancer.One occurrence of this group is permitted per Core Diagnosis. |
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Mandation |
Data Elements |
R |
|
R |
CHILDREN TEENAGERS AND YOUNG ADULTS AGE CATEGORY (CONSULTANT AT DIAGNOSIS) |
DIAGNOSIS: NEUROBLASTOMA - CHILDREN, TEENAGERS AND YOUNG ADULTS (CTYA)
To carry diagnostic Neuroblastoma details for Children, Teenagers and Young Adults (CTYA) cancer.One occurrence of this group is permitted per Core Diagnosis. |
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Mandation |
Data Elements |
R |
LIFE THREATENING SYMPTOMS AT DIAGNOSIS INDICATOR (NEUROBLASTOMA) |
SITE SPECIFIC STAGING CHOICE - CHILDREN, TEENAGERS AND YOUNG ADULTS (CTYA) | |
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Mandation |
CHOICE 1 - WILMS
To carry staging renal tumour details for Children, Teenagers and Young Adults (CTYA) cancer.One occurrence of this group is required per Core Site Specific Staging group if selected as the choice. |
M |
|
Or | |
Mandation |
CHOICE 2 - INTERNATIONAL NEUROBLASTOMA RISK GROUP
To carry staging Neuroblastoma details for Children, Teenagers and Young Adults (CTYA) cancer.One occurrence of this group is required per Core Site Specific Staging group if selected as the choice. |
M |
|
Or | |
Mandation |
CHOICE 3 - INTERNATIONAL NEUROBLASTOMA RISK GROUP
To carry staging Hepatoblastoma details for Children, Teenagers and Young Adults (CTYA) cancer.One occurrence of this group is required per Core Site Specific Staging group if selected as the choice. |
M |
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M |
|
Or | |
Mandation |
CHOICE 4 - RETINOBLASTOMA
To carry staging Retinoblastoma details for Children, Teenagers and Young Adults (CTYA) cancer.One occurrence of this group is required per Core Site Specific Staging group if selected as the choice. |
M |
TREATMENT: PRINCIPAL TREATMENT CENTRE CHOICE - CHILDREN, TEENAGERS AND YOUNG ADULTS (CTYA) | |
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Mandation |
CHOICE 1 - CHILDREN
To carry Treatment details for the nominated children's Principal Treatment Centre for Children, Teenagers and Young Adults (CTYA) cancer.One occurrence of this group is required per Core Treatment if selected as the choice. |
M |
ORGANISATION IDENTIFIER (CHILDRENS NOMINATED PRINCIPAL TREATMENT CENTRE) Multiple occurrences of this item are permitted |
Or | |
Mandation |
CHOICE 2 - TEENAGE YOUNG ADULT (TYA)
To carry Treatment details for the nominated Teenage Young Adult's (TYA) Principal Treatment Centre for Children, Teenagers and Young Adults (CTYA) cancer.One occurrence of this group is required per Core Treatment if selected as the choice. |
M |
ORGANISATION IDENTIFIER (TEENAGE YOUNG ADULTS NOMINATED PRINCIPAL TREATMENT CENTRE) Multiple occurrences of this item are permitted |
TREATMENT: CHILDREN'S CANCER AND LEUKAEMIA GROUP (CCLG) - CHILDREN, TEENAGERS AND YOUNG ADULTS (CTYA)
To carry treatment details for the Children's Cancer and Leukaemia Group (CCLG) guidelines for Children, Teenagers and Young Adults (CTYA) cancer.One occurrence of this group is permitted per Core Treatment. |
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Mandation |
Data Elements |
R |
PATIENT TREATED TO CHILDRENS CANCER AND LEUKAEMIA GROUP GUIDELINES INDICATOR |
R |
LABORATORY RESULTS: NEUROBLASTOMA - CHILDREN, TEENAGERS AND YOUNG ADULTS (CTYA)
To carry Neuroblastoma laboratory result details for Children, Teenagers and Young Adults (CTYA) cancer.One occurrence of this group is permitted per Core Laboratory Results. |
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Mandation |
Data Elements |
R |
RENAL TUMOURS - CHILDREN, TEENAGERS AND YOUNG ADULTS (CTYA)
To carry renal tumour details for Children, Teenagers and Young Adults (CTYA) cancer.One occurrence of this group is permitted. |
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Mandation |
Data Elements |
R |
|
R |
PATHOLOGICAL RISK CLASSIFICATION CODE (AFTER PREOPERATIVE CHEMOTHERAPY) |
RETINOBLASTOMA - CHILDREN, TEENAGERS AND YOUNG ADULTS (CTYA)
To carry Retinoblastoma details for Children, Teenagers and Young Adults (CTYA) cancer.Multiple occurrences of this group are permitted. |
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Mandation |
Data Elements |
R |
|
R |
CHEMOTHERAPY - CHILDREN, TEENAGERS AND YOUNG ADULTS (CTYA)
To carry chemotherapy details for Children, Teenagers and Young Adults (CTYA) cancer.One occurrence of this group is permitted. |
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Mandation |
Data Elements |
R |
CHILDREN TEENAGERS AND YOUNG ADULTS AGE CATEGORY (CONSULTANT PRESCRIBING CHEMOTHERAPY) |
Also Known As
This data set is also known by these names:
Context | Alias |
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Also known as | Cancer Outcomes and Services Data Set: Children, Teenagers and Young Adults |
Full name | Children, Teenagers and Young Adults Data Set |
Schema | CTYA |
Short name | Children, Teenagers and Young Adults |