The Get Data Out programme from the National Disease Registration Service publishes detailed statistics about small groups of cancer patients in a way that ensures patient anonymity is maintained.
The Get Data Out programme currently covers 13 cancer sites. This data release updates the incidence data for all 13 sites to cover 2013-2019 (previous data covered 2013-2018) and also adds a new cancer site, eye cancer.
The 14 cancer sites now covered by Get Data Out are: ‘Bladder, Urethra, Renal Pelvis and Ureter’, ‘Bone cancer’, ‘Brain, meningeal and other primary CNS tumours’, ‘Eye cancer’, ‘Head and neck’, ‘Kaposi sarcoma’, ‘Kidney’, ‘Oesophageal and Stomach’, ‘Ovary, fallopian tube and primary peritoneal carcinomas’, ‘Pancreas’, ‘Prostate’, ‘Sarcoma’, ‘Soft tissue and peripheral nerve cancer’ and ‘Testicular tumours including post-pubertal teratomas’.
Anonymisation standards are designed into the data by aggregation at the outset. Patients diagnosed with a certain type of tumour are divided into many smaller groups, each of which contains approximately 100 patients with the same characteristics. These groups are aimed to be clinically meaningful and differ across cancer sites. For each group of patients, Get Data Out routinely publish statistics about incidence, routes to diagnosis, treatments and survival.
All releases and documentation are available on the Get Data Out main technical page.
Before using the data, we recommend that you read our guide for first time users.
The data is available in an open format for anyone to access and use. We hope that by releasing anonymous detailed data like this we can help researchers, the public and patients understand these diseases, plan NHS services, and improve cancer care.
If you have feedback or any other queries about Get Data Out, please email us at [email protected] and mention 'Get Data Out' in your email.