Cancer Outcomes and Services Data Set - Haematological

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 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.

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


CANCER CARE PLAN CHOICE - HAEMATOLOGICAL
Mandation	CHOICE 1 - CHRONIC MYELOID LEUKAEMIA (CML) To carry cancer care plan details specific to Chronic Myeloid Leukaemia (CML) for Haematological cancer.One occurrence of this group is required per Core Cancer Care Plan if selected as the choice.
M	CHRONIC MYELOID LEUKAEMIA INDEX SCORE (SOKAL)
Or
Mandation	CHOICE 2 - MYELODYSPLASIA To carry cancer care plan details specific to Myelodysplasia for Haematological cancer.One occurrence of this group is required per Core Cancer Care Plan if selected as the choice.
M	REVISED INTERNATIONAL PROGNOSTIC SCORING SYSTEM SCORE
Or
Mandation	CHOICE 3 - CHRONIC LYMPHOID LEUKAEMIA (CLL) To carry cancer care plan details specific to Chronic Lymphoid Leukaemia (CLL) for Haematological cancer. One occurrence of this group is required per Core Cancer Care Plan if selected as the choice.
M	SPLENOMEGALY INDICATOR
Or
Mandation	CHOICE 4 - FOLLICULAR LYMPHOMA To carry cancer care plan details specific to Follicular Lymphoma for Haematological cancer.One occurrence of this group is required per Core Cancer Care Plan if selected as the choice.
R	NUMBER OF ABNORMAL NODAL AREAS
R	FOLLICULAR LYMPHOMA INTERNATIONAL PROGNOSTIC INDEX 2 SCORE
Or
Mandation	CHOICE 5 - DIFFUSE LARGE B-CELL LYMPHOMA (DLBCL) To carry cancer care plan details specific to Diffuse Large B-Cell Lymphoma (DLBCL) for Haematological cancer.One occurrence of this group is required per Core Cancer Care Plan if selected as the choice.
R	NUMBER OF ABNORMAL NODAL AREAS
R	PRIMARY EXTRANODAL CANCER SITE
R	NUMBER OF EXTRANODAL SITES CODE
R	REVISED INTERNATIONAL PROGNOSTIC INDEX SCORE
Or
Mandation	CHOICE 6 - HODGKIN LYMPHOMA To carry cancer care plan details specific to Hodgkin Lymphoma for Haematological cancer.One occurrence of this group is required per Core Cancer Care Plan if selected as the choice.
R	NUMBER OF ABNORMAL NODAL AREAS
R	PRIMARY EXTRANODAL CANCER SITE
R	HASENCLEVER INDEX SCORE
Or
Mandation	CHOICE 7 - ACUTE LYMPHOBLASTIC LEUKAEMIA (ALL) To carry cancer care plan details specific to Acute Lymphoblastic Leukaemia (ALL) for Haematological cancer.One occurrence of this group is required per Core Cancer Care Plan if selected as the choice.
M	EXTRAMEDULLARY DISEASE SITE Multiple occurrences of this item are permitted


SITE SPECIFIC STAGING - HAEMATOLOGICAL
Mandation	CHOICE 1 - ANN ARBOR To carry Ann Arbor site specific staging details for various haematological diseases for Haematological cancer.One occurrence of this group is required per Core Site Specific Staging if selected as the choice.
M	ANN ARBOR STAGE
Or
Mandation	CHOICE 2 - CHRONIC LYMPHOID LEUKAEMIA (CLL) To carry Chronic Lymphoid Leukaemia (CLL) staging details for Haematological cancer.One occurrence of this group is required per Core Site Specific Staging if selected as the choice.
M	BINET STAGE
Or
Mandation	CHOICE 3 - MYELOMA To carry Myeloma staging details for Haematological cancer.One occurrence of this group is permitted per Core Site Specific Staging if selected as the choice.
M	REVISED INTERNATIONAL STAGING SYSTEM STAGE FOR MULTIPLE MYELOMA
Or
Mandation	CHOICE 4 - NON HODGKIN LYMPHOMA (NHL) To carry Non Hodgkin Lymphoma (NHL) staging details for Haematological cancer.One occurrence of this group is required per Core Site Specific Staging if selected as the choice.
M	MURPHY ST JUDE STAGE


ANN ARBOR: EXTENSIONS - HAEMATOLOGICAL To carry supporting Ann Arbor staging details for various haematological diseases as specified.One occurrence of this group is permitted.
Mandation	Data Elements
R	ANN ARBOR SYMPTOMS INDICATION CODE
R	ANN ARBOR EXTRANODALITY INDICATION CODE
R	ANN ARBOR BULKY DISEASE INDICATION CODE
R	ANN ARBOR SPLENIC INDICATION CODE


LABORATORY RESULTS CHOICE - HAEMATOLOGICAL
Mandation	CHOICE 1 - VARIOUS HAEMATOLOGICAL DISEASES To carry laboratory results for various haematological diseases for Haematological cancer.One occurrence of this group is required per Core Laboratory Results if selected as the choice.
R	EUROPEAN LEUKAEMIA NET GENETIC RISK CODE
R	WHITE BLOOD CELL COUNT (HIGHEST PRETREATMENT)
Or
Mandation	To carry laboratory results for various haematological diseases for Children Teenagers and Young Adults (CTYA) Haematological cancer.One occurrence of this group is required per Core Laboratory Results if selected as the choice. CHOICE 2 - VARIOUS HAEMATOLOGICAL DISEASES: CHILDREN, TEENAGERS AND YOUNG ADULTS (CTYA).
R	BONE MARROW BLAST CELLS PERCENTAGE
R	CYTOGENETIC FINDINGS COMMENT
Or
Mandation	CHOICE 3 - PAEDIATRIC MYELODYSPLASIA To carry Paediatric Myelodysplasia laboratory result details for Haematological cancer.One occurrence of this group is required per Core Laboratory Results if selected as the choice.
R	CELLULARITY PERCENTAGE
R	DIEPOXYBUTANE TEST RESULT
R	DYSPLASTIC HAEMOPOIESIS TYPE
Or
Mandation	CHOICE 4 - ACUTE LYMPHOBLASTIC LEUKAEMIA (ALL) - RESPONSE To carry Acute Lymphoblastic Leukaemia (ALL) Response laboratory result details for Haematological cancer.One occurrence of this group is required per Core Laboratory Results if selected as the choice.
M	LEUKAEMIC CELLS PRESENT POST MINIMAL RESIDUAL DISEASE INDUCTION PERCENTAGE


DIAGNOSIS CHOICE - HAEMATOLOGICAL
Mandation	CHOICE 1 - MIXED PHENOTYPE ACUTE LEUKAEMIA (MPAL) To carry diagnostic Mixed Phenotype Acute Leukaemia (MPAL) details for Haematological cancer.One occurrence of this group is required per Core Diagnosis if selected as the choice.
R	MIXED PHENOTYPE ACUTE LEUKAEMIA SYMPTOMS (AT DIAGNOSIS) Multiple occurrences of this item are permitted
R	EUROPEAN GROUP FOR THE IMMUNOLOGICAL CLASSIFICATION OF LEUKAEMIA SCORING SYSTEM SCORE
Or
Mandation	CHOICE 2 - ACUTE MYELOID LEUKAEMIA (AML) To carry diagnostic Acute Myeloid Leukaemia (AML) details for Haematological cancer.One occurrence of this group is required per Core Diagnosis if selected as the choice.
R	FRENCH AMERICAN BRITISH CLASSIFICATION (ACUTE MYELOID LEUKAEMIA)
R	CYTOGENETIC RISK GROUP (PAEDIATRIC MOLECULAR GENETIC ABNORMALITIES)
R	ACUTE MYELOID LEUKAEMIA RISK FACTORS (AT DIAGNOSIS)
Or
Mandation	CHOICE 3 - PAEDIATRIC MYELODYSPLASIA To carry diagnostic Paediatric Myelodysplasia details for Haematological cancer.One occurrence of this group is required per Core Diagnosis if selected as the choice.
R	PAEDIATRIC MYELODYSPLASIA CLINICAL FINDINGS (AT DIAGNOSIS) Multiple occurrences of this item are permitted
R	UNDERLYING DISEASE ASSOCIATED WITH MYELODYSPLASIA (AT DIAGNOSIS) Multiple occurrences of this item are permitted
R	CONGENITAL ANOMALIES COMMENT
R	OTHER MYELODYSPLASIA SYMPTOMS AT DIAGNOSIS Multiple occurrences of this item are permitted


ACUTE LEUKAEMIAS - HAEMATOLOGICAL To carry treatment details for Acute Leukaemias for Haematological cancer.One occurrence of this group is permitted per Core Treatment.
Mandation	Data Elements
R	PRIMARY INDUCTION CHEMOTHERAPY FAILURE INDICATOR


MOLECULAR AND BIOMARKERS - SOMATIC TESTING FOR TARGETED THERAPY AND PERSONALISED THERAPY: NON HODGKIN LYMPHOMA - HAEMATOLOGICAL Somatic Testing for Targeted Therapy and Personalised Medicine.
Mandation	Data Elements
M	ALK GENE FUSION STATUS (ANAPLASTIC LARGE CELL LYMPHOMA)

Also Known As

This data set is also known by these names:

Context	Alias
Also known as	Cancer Outcomes and Services Data Set: Haematological
Full name	Haematological Data Set
Short name	Haematological