The Get Data Out programme routinely publishes cancer statistics produced by NHS D (previously PHE) 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 ovarian, fallopian tube, and primary peritoneal carcinomas between 2013 and 2020.
The cohort of ovary, fallopian tube and primary peritoneal carcinomas used for Get Data Out is all tumours coded in ICD10 and ICD-O-2 to
Only female patients are included in the cohort.
This cohort contains ovarian, tubal and primary peritoneal cancers. Peritoneal mesotheliomas (C45.1 in ICD-10) are not included.
D39.1 (Neoplasm of uncertain or unknown behaviour of ovary) has been included, to avoid excluding some borderline tumours which are coded to this site in ICD-10.
D07.3 (Carcinoma in situ of Other and unspecified female genital organs) has been excluded. These are not invasive malignancies and most often arise as a secondary tumour to a primary invasive gynaecological cancer. Only about 50 per year arise in England.
Morphology exclusions for C48 have been updated slightly from previous publications, to ensure exclusion of all non-ovarian tumours.
This cohort includes all ‘borderline’ ovarian tumours and a small number of other such tumours considered to have uncertain behaviour. ‘Borderline’ ovarian tumours were previously considered to be malignant but changes in coding have reflected a shift towards seeing them as having uncertain behaviour. They are included to give comparability with previous outputs which also include borderline tumours.
Please note that this cohort of ovarian and related tumours may differ from others produced by ONS and NCRAS.
Tumours are classified in the following way by site (ICD-10) and morphology (ICD-O-2):
C57.7, C57.8, C57.9 are all classified as ‘Non-specific site’.
All other tumours included at sites C56, C57 and C48 are classified according to their ICD-O-2 morphology coding, with “1st char of site (ICD-10)” as C in the attached Appendix. D39.1 tumours are categorised by morphology, with “1st char of site (ICD-10)” as D according to the table in the Appendix.
Cohort and classifications were created with pathologist Dr Brian Rous at NCRAS.
Malignant epithelial tumours were then split by stage at diagnosis, into the following groups:
The registration of 2019 tumours were being completed during the COVID-19 pandemic. This led to reduced access to the usual data sources, and despite the registry’s best efforts a noticeable decrease in data quality in some fields. This is most commonly seen in an increase in ‘stage unknown’ tumours, and a corresponding decrease in other stage groups. This should be noted when undertaking time-series analysis on the data.
The vast majority of cases are staged in FIGO, UICC 7 or UICC 8 system. A very small percentage of cancers (less than 1%), were staged in other systems, as reported in the known limitations page. The following table shows the percentage of cases staged in FIGO, UICC7 and UICC8 over time.
Borderline ovarian tumours were split into the following age groups:
Miscellaneous and unspecified ovarian tumours were split into ages:
Sex cord-stromal and germ cell tumours were split into the following age groups:
Malignant epithelial ovarian tumours were split into different age groups depending on the stage at diagnosis. For stage 1 malignant epithelial ovarian tumours the following stage split was used:
For malignant epithelial ovarian tumours diagnosed at stage 2-3 and stage 4:
Malignant epithelial ovarian tumours with an unknown stage at diagnosis, the following stage split was used: