About us

What is the NDRS?

The National Disease Registration Service (NDRS) collects data on people in England with cancer, congenital anomalies and rare diseases.

NDRS is made up of two disease registers:

  • NCRAS – National Cancer Registration and Analysis Service
  • NCARDRS – National Congenital Anomaly and Rare Disease Registration Service

Why do we collect patient data?

Patient data helps us better understand and treat cancer, rare diseases and congenital anomalies.  This data is used by NHS clinical teams to help plan and improve treatments and healthcare in England. It also helps academics and charities with research and policy making .

If you would like to see some examples of how patient data has been used for research, you can read our Data Stories or watch our webinar recordings.

Examples of data we collect:

  • hospital episode statistics which tell us how often someone with cancer attends hospital and the treatment they received
  • information on treatments to monitor their effectiveness
  • the number of babies born with congenital anomalies each year

How is patient data kept safe?

Only a limited number of highly trained NDRS staff have access to personally identifiable data. Academic researchers, charities, NHS clinical teams and commissioners can request permission to access the data under strict and secure arrangements.

Find out more about how patient data is kept safe here

Webpage last updated: August 2021