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Publication, Part of

Cancer Registration Statistics, England, 2022

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Cancer registration data collection, quality and methodology


New data added:

  • Incidence counts and rates have been re-stated for cancers diagnosed between 2012 to 2022, reflecting the updated populations available using the 2021 census
  • Counts and rates have been provided for Persons in addition to Males and Females
  • We now use https://fingertips.phe.org.uk/documents/2021-lsoa-imd-lookup.xlsx to align deprivation scores with 2021 LSOAs
  • The data downloads for Cancer Registrations (Incidence)  now contain counts and age-standardised rates for England only. The interactive dashboard contains counts, age-specific, non-standardised and age-standardised rates for England and sub-national geographies

Coming Summer 2025:

  • Incidence counts and rates for small geographic areas including, Upper Tier Local Authority (UTLA) 2024 boundaries, Local authority district / unitary authority (LAUA) 2024 boundaries and Middle layer super output area (MSOA) using census 2021

5 June 2025 11:00 AM

Correction notice:

A coding error has resulted in incorrect populations being used as a denominator for age-specific rates for sub-national estimates. This has affected Tables 1 to 4.  The coding error has been fixed and the age-specific rates  for Government office regions, Cancer alliances,  and Integrated care boards have been updated to the correct values.

12 November 2024 12:25 PM

Cancer registration data collection, quality and methodology

Data collection

Cancer registration is the systematic collection of data about cancer and tumour diagnoses. In England, this data collection is managed by the National Disease Registration Service (NDRS) in NHS England. Every year, the NDRS collects information on over 300,000 cases of cancer, including patient details, as well as detailed data about the type of cancer, how advanced it is and the treatment the patient receives. The registrations are made using the ICD-O-3 coding system. Over 99% of these registrations can be coded to the ICD-10 coding system for values between C00.0 and D48.9.

Data are submitted to the NDRS from a range of healthcare providers and other services (for example, histopathology and haematology services, radiotherapy departments, screening services and general practitioners). The National Cancer Registration and Analysis Service (NCRAS), which is a part of NDRS, then uses these multiple sources to build a comprehensive picture of cancer incidence in England, as well as other detailed analysis and interpretations covering the entire cancer pathway on all patients in England. For more information, please see the Data Resource Profile for NCRAS.

The quality and accuracy of the data are validated and processed to ensure that they are consistent and to a high standard. Once all the expected records for any one incidence year have been received and validated, NCRAS takes a snapshot of the dataset, which provides a single, consistent source of cancer registrations. Cancer incidence for 2022 was created from a snapshot taken on 4 August 2024, for the period January to December 2022. The snapshot will vary year on year due to the dynamic nature of registration data:

  • new cancer cases will be registered which can include new “late” registrations after cancer incidence has been published for that year
  • cancer records can be amended, for example the site code of a record can be modified when more accurate diagnostic information becomes available
  • A less common reason for changes to historical data is a patient exercising their right to opt-out of the cancer registration datasets.
  • cancer records can be cancelled (although this is uncommon)

Data quality and methodology

The figures for numbers of “all cancer” in this release refer to all malignant neoplasms which include International Classification of Diseases: ICD-10 codes of C00* to C97, excluding non-melanoma skin cancer (ICD-10 C44*).  

Although a common cancer, the available figures for Non-Melanoma Skin Cancer (NMSC) including BCC and cSCC, before 2013 are known to be underestimates and unreliable for comparison purposes over time. This is because there had been variation in the policies and practices for the recording of NMSC before the establishment of a national cancer registry in 2013. Since 2013, a first NMSC tumour per patient per year methodology has been used which consistently and better reflects the true incidence of NMSC in England. 

Any regional differences in benign, uncertain and unknown neoplasms should be interpreted with caution. There is known historical variation in the way these tumours were recorded across the country. 

Patients have been excluded where a sex-specific diagnosis code does not match the person-stated gender.  This may have excluded some transgender and non-binary patients.

The most recent 5 years of registered cancer diagnoses may be revised to reflect the results of extra tests that happen while a patient is being treated. Although the estimates of counts for previous years may alter, these changes will be small. After 5 years have elapsed, it is unusual to see these changes occurring. 

The methodology documentation contains important information on: 

  • the strengths and limitations of the data and how it compares with related data 
  • uses and users of the data 
  • how the output was created 
  • the quality of the output including the accuracy of the data. 

 

The stage at diagnosis of a cancer indicates how far the disease has progressed when a patient is first treated. The stage at diagnosis can influence the treatments offered to patients and the likely outcomes. Not every cancer has a staging system. Where they exist, estimates of incidence by stage at diagnosis are provided.

The staging system used is typically TNM. The TNM system puts cancers in a group from 1 to 4 depending on the cancer, or tumour, size (T); which, if any, lymph nodes have cancer cells (N); and if the cancer has spread (metastasised) to other parts of the body (M). Different versions of TNM are used according to the diagnosis year and type of cancer, in line with international guidance. 

  • Staging systems are often valid for specific combinations of the cancer site and cell types (morphologies).
  • Some cancers come from a stageable site but have a cell type that means the cancer cannot be staged; these cancers are called “unstageable”.
  • Some cancers come from a stageable site and have a cell type that means they could be staged but some other vital information is not available. These cancers are described as having missing data.

For some cancers, a specific staging system is used instead of TNM:  

  • International Federation of Gynecology and Obstetrics (FIGO) staging for gynaecological (ovary, cervical and uterus) cancers  
  • Ann Arbor staging for non-Hodgkin lymphomas in adults 
  • Murphy St Jude staging for non-Hodgkin lymphomas in children 
  • National Wilms Tumour Study staging for Wilms tumours. The NWTS staging system has stages 1 to 5; diagnoses at stage 5 have been mapped to the stage 3 to 4 group. 

The staging systems and for which cancer groups they can be applied are presented in Case-mix Adjusted Percentage of Cancers Diagnosed at Stages 1 and 2 in England Methodology.

 

Because BCCs and cSCCs are very common with generally low mortality rates, these registrations are auto-processed, and stage is not routinely collected for these cancer sites.  Over 98% have a missing stage, and so a breakdown by stage is not presented.

 

The mortality data presented here is not linkable to individual patients which means estimates of mortality by stage at diagnosis or other diagnostic information cannot be presented.

 

The IMD published in 2019 was produced at Lower-layer Super Output Areas (LSOA) level using the LSOA boundaries published in 2011. In order to use the most recent LSOA boundaries which are reported on in this publication, we adjusted the IMD published in 2019 to align with the LSOA boundaries published in 2021. To adjust the IMD scores we followed the methods in Appendix A of The English Indices of Deprivation 2019 research report. For further information please contact [email protected].



Last edited: 10 June 2025 11:46 am