A national review of merkel cell carcinoma epidemiology in England 2004-2018 (ODR2021_095)
Norfolk and Norwich University Hospitals NHS Foundation Trust · NHS Trust
Expired The latest version ended on 12 April 2024. The September 2026 register still lists the agreement, but its term has passed.
- Reference
- DARS-NIC-656881-X0G0X
- Latest version
- v1.2
- Term of latest version
- 23 January 2023 to 12 April 2024
- Start date
- Before 23 January 2023
- Data controller
- Sole Data Controller
- Commercial purposes
- No
- Sublicensing
- No
- Files released to date
- 0
Why the data was released
Objective for processing
This project aims to report national epidemiological data from England on merkel cell carcinoma (MCC) between 2004 to 2018. Specifically, the total number of people diagnosed with MCC per year and how this varies across age, gender, ethnicity, income, associated cancer, immunosupression and geographical region. This project will report the body location of MCC and how advanced MCC was at diagnosis. Finally the study will report the treatment received and survival in MCC. The above will be assessed between 2004 to 2018 to look for trends.
Processing activities
This study is a retrospective, observational study that will take place at Norfolk and Norwich University Hospital. This project does not involve patient contact.
Cohort inclusion criteria:
All primary tumours with site code ICD10 C44x (non melanoma skin cancer) and morphology codes ICD-0-2 8247, 8246, 8240, 8249, 8041, 8013, 8045 (merkel cell carcinoma and neuroendocrine carcinomas)
Diagnosed between 1/1/2004 and latest available year for analysis
Patients resident in England, all ages, sex and ethnicities
Although a majority will be diagnosed on pathology report, those registered as a result of that recorded on the death certificate will also be used
Cohort exclusion criteria: none
Data will be extracted from the National Cancer Registration dataset on the Cancer Analysis System (CAS) produced by the National Registration and Cancer Analysis Service (NRCAS) in NHS Digital.
In order to access this data, formal approval from PHE office of data requests has been requested (ODR2021_095). Data will be sent in the form of an excel document to KM, JJ, NJL and ZV by email with a password protected link. Data will only be accessed by KM, JJ, NJL, ZV. The analysis period between 2004 to 2018 was chosen because PHE advised this period reflects when the CAS coding system and data collection is consistent.
Analysis plan
STATA will be used for statistical analysis. Crude incidence counts will be reported. Age specific and age standardised rates will be determined. Survival at 1, 5 and 10 years will be reported. We will conduct regression analysis to evaluate the effect of age, gender, ethnicity, deprivation, associated immunosuppression, body location, stage at diagnosis, treatment received and geographical region on incidence and survival.
Expected output
Published in British Journal of Dermatology as original research (in print issue planned Feb 2023). Oral presentation in main plenary meeting at BAD international conference Glasgow (7/7/22).
Expected measurable benefits
As per original application
Benefits reported so far
Improved understanding of epidemiology of MCC - regional variation, incidence and trend analysis, risk factors (patient and tumour), mortality, prognostic markers
Datasets on the latest version
No datasets are listed against the latest version in the register.
Files released
Files released counts only files released externally by DARS. Access granted in NHS England's own systems, such as its Secure Data Environment, is not included.
No files recorded as released under this agreement.
Version history
The register lists each renewal of this agreement as a separate row. This site has 1 version — earlier versions exist, but none has been listed in an edition this site holds.
DARS-NIC-656881-X0G0X-v1.2 23 January 2023 to 12 April 2024
- Title
- A national review of merkel cell carcinoma epidemiology in England 2004-2018 (ODR2021_095)
- Commercial
- No
- Sublicensing
- No
- Datasets
- 0
- Files released
- 0
Register history
When this agreement appeared in, or was edited in, each monthly edition of the register. Built by comparing every edition this site holds.
-
February 2023 —
first listed. 1 version: DARS-NIC-656881-X0G0X-v1.2
Cite this page
NHS England (2026) Data Uses Register, September 2026 edition, agreement DARS-NIC-656881-X0G0X, “A national review of merkel cell carcinoma epidemiology in England 2004-2018 (ODR2021_095)”. Read via NHS Data Access Explorer (unofficial), https://healthdatauses.uk/agreements/dars-nic-656881-x0g0x/ (accessed [date]).
This address stays the same, but the page is rebuilt with each monthly edition, so the citation names the edition it shows. Every edition's data is kept in the facts store.
Source: datausesregister_september2026.xlsx, September 2026 edition of the NHS England Data Uses Register. Search that workbook for DARS-NIC-656881-X0G0X to see the original rows.