The Get Data Out programme routinely publishes cancer statistics produced by NHS E (previously PHE and NHS D) in a consistent table, called the Get Data Out (GDO) table. This table collects patients into groups with common characteristics, and then publishes information such as incidence, treatment rates, survival and Routes to Diagnosis for these groups.

This document sets out the definitions of the cohort and groups for Get Data Out tables for the 2023 release of data on sarcomas between 2013 and 2020.

Sarcoma cohort

The cohort of sarcomas used by Get Data Out is defined by site, morphology and behaviour in ICD-O-3rev1. The full table used, and a more human-readable summary version is available in the Appendix.

Tumour Type and Tumour Type 2

Tumours were classified into “Bone sarcoma” and “Soft tissue sarcoma” and then further into morphological subgroups:

Groups are primarily defined by the morphology of the tumour, sometimes this information will override the topographical site. Ewing sarcomas at all sites in the body are classified in the Ewing sarcoma group as a subtype of Bone sarcoma. See the Appendix for further details.

Bone tumours of intermediate behaviour and Soft tissue tumours of intermediate behaviour are sarcomas with behaviour coded as uncertain, /1 in ICD-O-3 rev1. Some specific types of sarcoma with behaviour 1 are included within their specific groups (e.g. 8936/1 as Gastrointestinal stromal sarcoma).

Classifications were created by analysts Andrew Bacon and Kwok Wong (NCRAS) with clinical/pathological experts Sandra Strauss (UCL / NCRAS), Malee Fernando (Sheffield Teaching Hospitals) and Brian Rous (NCRAS) and advice from Sarah McDonald and Bevis Man (Sarcoma UK).

Tumour Type 3

Gastrointestinal stromal sarcoma (GIST) tumours were further split by site (using site_icdo3rev2011). GIST tumours with a site code C16 were classified as stomach GISTs and GIST tumours with a site code C17 were classified as small intestine GISTs. All other GISTs were grouped as ‘other’ site.

Age

Where groups were large enough an age split was used. For stomach GISTs and undifferentiated sarcomas the following age split was used:

The following age splits were used for Leiomyosarcoma:

Liposarcoma:

and other malignant soft tissue tumours:

Suppression of data outputs

Some of these groups of sarcomas contain a small number of patients, with fewer than 55 cases observed in England each year. To protect patient privacy, only incidence will be published for these small groups. All other data outputs (currently Routes to Diagnosis, treatment and survival) will be suppressed for these groups. However, all outputs will be published for these groups on a 3-year non-rolling basis, starting from 2013-2015.

The groups for which this suppression of data outputs will be performed are:

Appendix

Site-behaviour-morphology for sarcomas

Two tables are provided, the full machine-readable look-up with each permutation of site, morphology and behaviour as a separate row (14,000 rows) and a human-readable summary table with multiple sites and behaviours on each row (260 rows).

All codes are in ICD-O-3 rev1.

Human-readable summary table

‘All sites’ in this table refers to ICD O3 C00, C01, C02, C03, C04, C05, C06, C07, C08, C09, C10, C11, C12, C13, C14, C15, C16, C17, C18, C19, C20, C21, C22, C23, C24, C25, C26, C30, C31, C32, C33, C34, C37, C38, C39, C40, C41, C42, C44, C47, C48, C49, C50, C51, C52, C53, C54, C55, C56, C57, C58, C60, C61, C62, C63, C64, C65, C66, C67, C68, C69, C70, C71, C72, C73, C74, C75, C76, C77, C80