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National Disease Registration Service (NDRS)

NDRS collects data on patients with cancer, congenital anomalies and rare diseases and is made up of two disease registers. These are the National Cancer Registration and Analysis Service (NCRAS) and the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS).

On 1 October 2021, responsibility for the National Disease Registration Service (NDRS) transferred from Public Health England (PHE) to NHS Digital. NHS Digital is the data controller for this data. 

What the data is used for

The NDRS collects, analyses, publishes and shares data on cancer, rare diseases and congenital anomalies. This helps the NHS, researchers and others including industry partners and charities, to:

  • understand these diseases
  • improve diagnosis
  • plan NHS services
  • improve treatment
  • evaluate policy
  • improve genetic counselling
  • carry out research

Transparency notice

Read the full NDRS transparency notice. It explains in detail how and why NHS Digital operates the NDRS.


Types of data collected

The following data is collected:

  • the Cancer Outcomes and Services Dataset (COSD) - the national data standard for reporting cancer in the NHS in England
  • information on treatments to monitor their effectiveness
  • the number of babies born with congenital anomalies each year

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.

Find out more about how data is collected.


The data journey

A person’s healthcare journey is the source of the data. 

Read more about the steps involved in the data journey


Transfer to NHS Digital

On 1 October 2021, as part of the government’s strategy to transform the public health system in England, responsibility for the management of the NDRS transferred from Public Health England (PHE) to NHS Digital. NHS Digital is the data controller for this data.  

The move from PHE to NHS Digital does not change any of the services delivered by NDRS and we will continue to collect information on cancer, rare diseases and congenital anomalies. 

Bringing together data and technical expertsie from NDRS and NHS Digital will provide significant benefits for patients, clinicians, and the wider health and social care system. 


Opting out

NHS Digital has the experience, capability and expertise to keep the data safe and continue to provide access to those who need it to improve services for patients, allowing us to provide a comprehensive data service for the NHS.

If you do not want us to collect this information you can opt-out of the cancer, rare disease or congenital anomaly registry. 

Find out more about your rights and how to opt-out. Existing opt outs will continue to be respected.


Contact us

NDRS and NHS Digital colleagues are working hard to ensure that the transition of services is as smooth as possible for NDRS’ customers and its staff. There will be minimal changes to current processes from 1 October and all current communication channels will be maintained. 

If you have any questions about the transition, email us at: NDRSenquiries@nhs.net


Further information

For further information visit: www.ndrs.nhs.uk

Last edited: 7 October 2021 4:23 pm