What data is collected

And how we make it easy for you

We collect, quality assure and safely store information on patients with cancer, rare diseases and congenital anomalies.

We need as much high-quality data as possible to be effective. We have made it as simple as possible for you or someone in your team to safely transfer data via the secure NHS network.

Our highly trained staff then register, code, classify and quality-assure the data at secure sites across England.

The NDRS is made up of 2 disease registers:

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

 

NCRAS

NCRAS collects cancer data from:

  • histopathology and haematology services
  • medical records
  • radiotherapy departments
  • hospices
  • independent hospitals
  • screening services
  • death certificates
  • GPs
  • other UK cancer registries

By bringing together data from multiple sources, we can better understand cancer prevalence in England. We can see how cancer is being diagnosed, how patients are treated, and the outcome of their treatment.

 

NCARDRS

NCARDRS data sources include:

  • the National Down Syndrome Cytogenetic Register (NDSCR)
  • the British Isles Network of Congenital Anomaly Registers (BINOCAR) hub
  • 7 historical regional congenital anomaly registers

 

Thanks to clinicians and patients who send us this data, we can now positively impact public health.

For more information on registering rare diseases in England, please contact the rare disease team at: NCARDRS@phe.gov.uk.

Permission to collect patient data

The NDRS has legal permission to collect patient-level data and to use it to protect the health of the population. This permission is given under Section 251 of the NHS Act 2006. Everyone working with patient data is trained in information governance and follows strict rules to make sure patient information stays safe .

Every year, this support is reviewed by the Confidentiality Advisory Group of the Health Research Authority (HRA). Details of our current approval can be found here on the HRA website.

Webpage last updated: August 2021