Get Data Out
At the NDRS, we produce many outputs such as official statistics and reports and we support research in cancer, rare diseases and congenital anomalies.
The Get Data Out (GDO) programme is one of our outputs. It is made up of key cancer statistics for small groups of patients. It is meant for use by patients, charities and the general public. All patient data is anonymised, meaning no names or other identifiable information is included.
- incidence – how many people have the disease
- how and where the disease was diagnosed
We work in partnership with charities, clinicians and researchers to produce this data.
Will Jones, Chief Executive of the charity brainstrust, said:
“It’s really important for people who have a brain tumour and the people that are caring for them to see how many other people there are like them and what’s happening to them during the course of their illness. We think it’s a real step forward and certainly gives people who use our services and support a sense that they are not alone”.
So far, you can see data for the following types of cancer:
- bladder, urethra, renal pelvis and ureter
- bone cancer
- brain, meningeal and other primary CNS tumours
- head and neck
- Kaposi sarcoma
- oesophageal and stomach
- ovary, fallopian tube and primary peritoneal carcinomas
- pancreatic cancers
- soft tissue and peripheral nerve cancer
- testicular tumours including post-pubertal teratomas
If you have used GDO and have found it helpful or have some feedback, we would love to hear from you. Please email us at NDRSengagement@phe.gov.uk.