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Responsibility for the National Disease Registration Service (NDRS) has transferred to NHS Digital from Public Health England (PHE). The transfer is part of the government’s reforms to the public health system announced in March 2021.

The NDRS collects data on patients with cancer, congenital anomalies and rare diseases and consists of the National Cancer Registration and Analysis Service (NCRAS) and the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS). 

This data is used as a source of information and intelligence for patients, clinicians, public health and health-care professionals, researchers, and the commissioners of health services to drive improvements in healthcare. As a result of the transfer, NHS Digital is now the data controller for this data under data protection law.

NHS Digital keeps the nation's healthcare data safe and uses it to improve understanding of health problems, support world-class medical research, and make NHS services better.

Bringing together NDRS’ and NHS Digital’s data, capability and technical expertise will provide significant benefits for patients, clinicians, and the wider health and social care system over coming years by providing a more comprehensive data service for the NHS.

Fran Woodard, NHS Digital Executive Director, Data and Analytics Services recently said:

“We are delighted to welcome the National Disease Registration Service to our organisation. 

“These colleagues bring deep technical and clinical expertise and share our passion for enabling high quality data to be used to improve health outcomes. We are excited to be able to work even more closely together to help improve services for patients and frontline staff.”

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 no change to how data is currently processed and handled, minimal changes to current processes, and all current communication channels will be maintained.   

Data access will continue to be subject to rigorous scrutiny, releasing the minimum amount of data necessary for the approved purpose. Data security and confidentiality will continue to be paramount and patient data will still only be accessed by organisations with the appropriate legal basis and for the purpose of improving healthcare.

Details of who we share data with will continue to be published so we can be held to account and existing patient opt outs rights will continue to apply and be respected.

Notes for Editors

• You can find out more about the National Disease Registration Service and the transfer to NHS Digital through the links below:

  • NHS Digital National Disease Registration Service page
  • The National Disease Registration Service website
  • National Disease Registries Directions
  • National Disease Registration Services Transparency Notice
  • Location of PHE functions following reforms