Access to NDRS data

The National Disease Registration Service (NDRS) collects data on all cancers, rare diseases and congenital anomalies diagnosed each year in England. Cancer and congenital abnormalities data can be requested for research through NHS England’s Data Access Request Service (DARS) who enable the secure, transparent and ethical use of NHS health data.

We treat the data we hold with great care. All data which is shared by NDRS is subject to robust rules relating to privacy, security and confidentiality and only the minimum amount of data necessary to achieve the relevant health and social care purpose will be shared.

Wherever possible, de-personalised data or anonymous data is used and shared to protect patient confidentiality. We also apply the National Data Guardians Caldicott Principles to ensure we only provide the minimum amount of data necessary for the purpose for which it is to be used. In some cases, only personally identifiable data can be shared to achieve the purpose, but this is always done in accordance with the law and subject to safeguards to ensure that the data is kept safe and secure.

You can learn more about different types of data including de-personalised and anonymous data on the 'Understanding Patient Data' website.

All applications and enquiries for the National Cancer Registration and Analysis Service (NCRAS) or the National Congenital Anomaly and Rare Diseases Registration Service (NCARDRS) are handled by DARS. Data is made available to properly authorised analysts and researchers under our data access arrangements through the Data Access Request Service (DARS).

To begin the process of applying for access all applicant should use the DARS web pages on the NHS Digital website.

Data is available for release in the form of a pre-defined consolidated data set, or is available within the Secure Data Environment (SDE).

Potential requestors should familiarise themselves with the guidance on the DARS website and the data specification that sets out what is available.

You can learn more about how NDRS uses patient via the below links:

• examples of NDRS analytical outputs
• list of all NDRS scientific journal publications from January 2018 to December 2024 

The Simulacrum

This tool was created to help researchers and others who want to ask questions using cancer data to do so on a data set that looks and feels a lot like the real thing, but never compromises patient confidentiality. This data set is a synthetic version of the CAS core Patient and Tumour tables combined with the SACT data set. This can be downloaded freely for data exploration (though enquirers should send their queries to NCRAS to be run on the real CAS-based data for official results) and used for any purpose.

Find out more about the Simulacrum tool.

To raise awareness of the use of patient data to drive improvements in healthcare and save lives, the National Disease Registration Service asks all staff, data users and partners who are publishing information that uses NDRS data to apply the data acknowledgement.

"This work uses data that has been provided by patients and collected by the NHS as part of their care and support. The data are collated, maintained and quality assured by the National Disease Registration Service, which is part of NHS England."

 This data acknowledgement is based on the use MY data - data citation

Where and how to apply the acknowledgement

The statement should be applied to any documentation or output that is produced using NDRS data. This includes;

• reports
• briefings
• online tools and databases / dashboards
• open data resources and associated metadata
• journal/ academic publications
• press releases
• conference abstracts/posters**
• presentations

**Where there is a word count restriction the statement can be reduced to the following for use in abstracts and similar items:

"This work includes patient data collated by the National Disease Registration Service"

For any further information please contact National Disease Registration Service at [email protected]