Access to NDRS data

On 1 October 2021, the responsibility for the management of the National Disease Registration Service (NDRS), a collection of data on all cancers, rare diseases and congenital anomalies diagnosed each year in England, transferred from Public Health England (PHE) to NHS Digital.

Building on the huge progress made on digital transformation during the pandemic, on the 1 February 2023, NHSD and NHSX merged into NHS England. NHS England is now therefore the controller for the data held by the National Disease Registration Service (NDRS). 

Find out more about the NHS England merger on the NHS Digital website.

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 ever 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.

Data Access Services (DARS)

The data release function for NDRS is now managed by the Data Access Release Service (DARS) and all applications and enquiries for the National Cancer Registration and Analysis Service (NCRAS) or the National Congenital Anomaly and Rare Diseases Registration Service (NCARDRS) data have been migrated from the Public Health England Office for Data Release to DARS.

NDRS cancer registration data is made available to properly authorised analysts and researchers under our data access arrangements through the Data Access and Release Service (DARS). 

Potential requestors should familiarise themselves with the guidance on the DARS website and the data dictionary covering the data available for request.

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 2022 

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]