Detailed Statistics from the Get Data Out programme

The Get Data Out (GDO) programme publishes in-depth, anonymous data about cancer to support research. GDO produces key statistics about groups of cancer patients. Patients diagnosed with a certain type of tumour are split into many smaller groups, each of which contains approximately 100 patients with the same characteristics. For each group of patients, we routinely publish statistics about incidence, routes to diagnosis, treatments and survival. The GDO programme is unique amongst cancer publications from NDRS because it produces statistics about small groups of patients. We hope that by releasing detailed data like this we can help researchers, the public and patients themselves discover more about cancer.

Acknowledgement

This work uses data that has been provided by patients and collected by the NHS as part of their care and support. The data are collated, maintained and quality assured by the National Disease Registration Service, which is part of NHS England.

The purpose of the GDO programme is to produce detailed statistics on small, clinically meaningful groups of cancer patients. We work with teams of clinicians, coding experts, academics, and charity partners to design our cancer site 'partitions' to include groups of patients who share similar characteristics. These characteristics may be factors that are believed to drive the main variation in cancer outcomes, for example the site of the tumour, morphology of the tumour, stage of the tumour at diagnosis, or age of the patient at diagnosis. Sometimes we also group by characteristics with a high public interest in whether they cause variation, for example, the geography of the patient at diagnosis.

As a specific example, from our 'Oesophagus and stomach' site partition tree on the 'Specific GDO cancer sites' sub-tab of the 'Data' tab in the dashboard, one can explore groups of patients with oesophagus or stomach cancer. One specific group which contains approximately 100 patients per diagnosis year is patients with a stomach tumour in the cardia, which is known to be an adenocarcinoma, diagnosed at stage 4, where the patient is aged 70+ at diagnosis. All of the approximately 100 patients in this group share the same characteristics and the group is large enough to produce valid statistics and ensure confidentiality, but small enough to produce meaningful results on a distinct group.

GDO uses the same methodology as the main NDRS publications on incidence and mortality, cancer survival, cancer treatments, and routes to diagnosis. GDO differs from these publications in the way the data is structured. In general, the main publications break down the data for each cancer site by one or two factors of interest at a time, e.g., age at diagnosis and gender. In contrast, GDO uses the 'tree' structure to provide data on smaller, more detailed groups of patients.

Get Data Out currently publishes data on the four key statistics incidence, treatment, survival, and routes to diagnosis, for the following cancer sites:

• Bladder, urethra, renal pelvis and ureter
• Blood cancer (haematological neoplasms)
• Blood cancer (haematological neoplasm) transformations
• Bone
• Brain
• Eye
• Head and neck
• Kaposi sarcoma
• Kidney
• Liver and biliary tract
• Lung, mesothelioma, and other thoracic
• Oesophagus and stomach
• Ovary
• Pancreas
• Prostate
• Sarcoma
• Skin tumours
• Soft tissue
• Testes

Please see the 'Introduction', 'Data', 'FAQs', and 'Known limitations' tabs of the dashboard to understand the structure of the data and the methodology underlying each statistic. In particular, the interactive tree diagrams on the 'Specific GDO cancer sites' sub-tab of the 'Data' tab can be used to explore the groups of patients that we publish on within each individual cancer site. From the Data releases table on the 'All GDO cancer data' sub-tab of the 'Data' tab, all of the methodological information for each statistic can be found. Technical documents, codes, and standard operating procedures (SOPs) can be downloaded from the Documentation column.

Get Data Out is updated following the release of the main NDRS publications for each statistic. These are incidence and mortality, cancer survival, cancer treatments, and routes to diagnosis. Get Data Out does not currently cover all cancer sites, but we are working to expand the programme across more tumour groups. New cancer sites are added on an ad hoc basis.

The tool is produced by the National Disease Registration Service (NDRS). Please send any feedback or queries to [email protected] 

Please do not include sensitive or patient identifiable information.