Get Data Out
The challenge for the healthcare sector today is to be able to release more and more detailed information about diseases safely and in a way people can use. At NDRS, we’re meeting this challenge by working with charity partners to publish more in-depth data about cancers to give patients, carers and clinicians more insights in the disease. The Get Data Out programme analyses anonymised patient data to show the most recent information on:
- Incidence
- Survival
- Treatments
- Routes to Diagnosis
So far the programme has released data for four groups of tumours:
- brain, meningeal and other primary CNS tumours
- ovary, fallopian tube and primary peritoneal carcinomas
- pancreatic cancers
- testicular tumours including post-pubertal teratomas
Data on prostate cancer and sarcomas are planned for 2019.
The Get Data Out team works in partnerships with charities, clinicians and researchers to produce this data.
Will Jones, brainstrust’s Chief Executive 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’