Information governance guidance

The National Disease Registration Service (NDRS) is part of NHS England and collects patient data on rare diseases, congenital conditions and cancer in England. The NDRS provide expert timely analysis to support clinical teams, academics, charities and policy makers to help plan and improve treatments and healthcare in England. The data is used to: 

• look at numbers and trends of people diagnosed with congenital anomalies and rare diseases 
• improve health, care and services for people with these conditions 
• support patients by providing information about their condition 
• give the NHS information to help it further improve the services it provides
• support health research and NHS policy decision making

There are strict controls on who in the NDRS can see the information to protect patient confidentiality. Any data that NDRS shares with other organisations is done in accordance with the law, following robust rules relating to privacy, confidentiality and security.  You can find out more about how the NDRS keeps patient data safe in the NDRS patient information leaflet. 

If you would like to find out more about the NDRS and how they process personal data, visit the NDRS transparency notice page.

This Information Governance (IG) guide is to provide rare disease charities and support groups with an overview of the National Disease Registration Service (NDRS) and how they can support the sharing of rare disease data with the NDRS to help improve the coverage of rare diseases in our National Congenital Condition and Rare Disease Registration Service (NCARDRS) register.

NDRS has a legal instruction from the Secretary of State for Health and Social Care to collect and analyse confidential patient information relating to cancer, rare diseases and congenital anomalies.  This is called the National Disease Registries Directions 2021 (NDRS Direction) and is issued under section 254 of the Health and Social Care Act 2012 (2012 Act). 

The NDRS Direction allows us to collect data from patient registers, such as those maintained by rare disease charities and support groups, where their members have given their consent for their data be shared with the NDRS.

More information about our legal basis including under UK GDPR and the Data Protection Act 2018 is available in the NDRS Transparency Notice.

NDRS Data Provision Notice

We issue a Data Provision Notice to organisations we are collecting data from. This notice explains the purpose of the collection, our legal basis, the organisations in scope, and the form, manner and timing of the collection.  Appendix A of the NDRS Data Provision Notice has been updated to include rare disease patient charities and support groups as a category of organisations which NDRS can request the data from (with patient consent) using our powers under section 259(1)(b) of the 2012 Act.