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National Disease Registration Service

Summary

The National Disease Registration Service (NDRS) collects data on patients with, or at risk of cancer, a congenital anomaly or rare disease. The 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.

Controller NHS England
How we use the information (processing activities)

The National Disease Registration Service (NDRS) collects data on patients with or at risk of cancer, a congenital anomaly or rare disease. The 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.

More information about NDRS and how we process your data can be found on our website.
Does this contain sensitive (special category) data such as health information? Yes
Is data transferred outside the UK? NDRS uses UK hosted cloud-based storage provided by Amazon Web Services (our data processor). Pseudonymised congenital anomaly data is shared with the European’s Commission’s Joint Research Centre who run the European Network for Population-Based Registries for the Epidemiological Surveillance of Congenital Anomalies (EUROCAT) central registry in Italy. This is an international transfer of personal data and is permitted under Article 45(1) of UK GDPR as the transfer of personal data to Italy is covered by UK adequacy regulations.
How long the data is kept The NDRS will keep patient data for as long as it is necessary for the purposes outlined above in accordance with the Records Management Code of Practice 2021 and our Records Management Policy. Other organisations we share your personal data with must only keep it for as long as is necessary and as set out in their Data Sharing Agreement. Information about this will be provided in their privacy notices on their websites
Our lawful basis for holding this data Legal obligation
Your rights
  • Tick Be informed
  • Tick Get access to it
  • Tick Rectify or change it
  • Tick Erase or remove it
  • Tick Restrict or stop processing it
  • Cross Move, copy or transfer it
  • Tick Object to it being processed or used
  • Tick Know if a decision was made by a computer rather than a person
How can you withdraw your consent?

For some rare disease research studies and patient registers (for example, held by patient support charities), we collect your data under the National Disease Registries Directions 2021, where you have given your consent for your data to be shared with us. To discuss your rights on withdrawing consent or opting out of disease registration altogether, contact our Data Protection Officer at [email protected] and [email protected]. 

Where we use this data