How data is collected

We collect patient data from NHS clinical teams in England. We then quality assure the data and use it to improve the diagnosis and treatment of cancer, rare diseases and congenital anomalies.

What data is collected?

We collect data on all cancers, rare diseases and congenital anomalies diagnosed each year in England.

Each year we receive about 25 million records about cancer and register the 500,000 tumours that are diagnosed. We also collect data on over 1,400 different rare diseases and congenital anomalies.

We receive data from multiple sources across the NHS. We combine this data to create a registration record. Each registration record contains: 

  • demographic information: name, age, gender, postcode, NHS number 
  • information about the cancer diagnosis 
  • information about treatments and outcomes  

Once registered, we then follow your treatment for the rest of your life. We do this because we need to see if the disease develops or if there are any side-effects from the treatment you receive. 

Where does the data come from? 

The NHS sends patient data to us via a secure online network.

We receive data such as:  

  • information from screening clinics, X-rays and pathology labs 
  • information from the multi-disciplinary teams (MDTs) that meet to discuss treatment options for patients

The data is registered, checked and quality assured by our highly trained staff. This is to make sure the data is accurate and complete.

Find out how patient data is used here.

Webpage last updated: August 2021