National Disease Registration Service

On 1 October 2021, responsibility for the National Disease Registration Service (NDRS) transferred from Public Health England (PHE) to NHS Digital as part of the government’s reforms to the public health system announced in March 2021.  The Secretary of State for Health and Social Care directed NHS Digital to maintain and operate the NDRS from 1 October 2021 under the National Disease Registries Directions 2021 (Directions). 

On 1 February 2023, the statutory functions of NHS Digital transferred to NHS England and the National Disease Registries Directions 2021 are now treated as Directions to NHS England.

The purpose of these Directions is to support the delivery for the operation and maintenance of the NDRS, which comprises the National Cancer Registration and Analysis Service (NCRAS) and the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS), collectively the National Disease Registries. 

The NCRAS aims to increase prevention and early diagnosis of cancer; and to improve the management of NHS cancer services, NHS cancer treatment and care, research and patient outcomes, including better quality of life and longer survival.

Under section 259(1)(a) of the 2012 Act, this Notice is served in accordance with the procedure published as part of the NHS England duty under section 259(8) on the following persons:

Data provider organisations specified in Appendix A of the Data Provision Notice (who are:

• a health or social care body in England; or
• any person (other than a public body) who provides health services, or adult social care in England, pursuant to arrangements made with a public body exercising functions in connection with the provision of such services or care

Under section 259(1)(b) of the 2012 Act, this Notice is served in accordance with the procedure published as part of the NHS England duty under section 259(8) on the following persons:

Non health or social care public body providers specified in Appendix A. These data providers include, but are not limited to:

• private health care providers including laboratory services
• The British Pregnancy Advice Service (BPAS)
• organisations that hold or operate Congenital Anomaly or Rare Disease registers
• The Healthcare Quality Improvement Partnership (HQIP)

Data providers should continue to submit data to the National Disease Registration Service in accordance with the timings specified in Appendix A of the Data Provision Notice.

18 March 2026: This Notice has been updated to reflect the collection of Post Imaging Pancreatic Cancer (PIPC) audit data from NHS trusts providing pancreatic imaging services

February 2026: This Notice has been updated to reflect the collection of sickle cell and thalassemia data from the National Haemoglobinopathy Registry and the Universal Care Plan.

August 2025: This Notice has been updated to reflect the collection of data from rare disease patient charities.

May 2025: The Data Provision Notice has been updated to reflect additional data requirements regarding the collection of data from Renal Service Providers. Additional clarifications have also been included within the Appendix regarding compliance requirements for data providers.

26 January 2022: This Notice has been updated to reflect additional data requirements, in respect of the Cancer Patient Experience Surveys (adults and children/young people) and COVID-19 data from SGSS (Second Generation Surveillance System, the national laboratory reporting system used in England ).