National Disease Registration Service

On 1 October 2021, as part of the government’s strategy to transform the public health system in England, responsibility and management of the National Disease Registration Service (NDRS), which comprises the National Cancer Registration and Analysis Service (NCRAS) and the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS), was transferred to NHS Digital.

The data maintained by the NDRS was previously collected and analysed by Public Health England under section 2B of the National Health Service Act 2006 and Regulations 2 and 5 of the Health Services (Control of Patient Information) Regulations 2002. The Secretary of State has now directed NHS Digital to maintain and operate the NDRS from 1 October 2021 under the National Disease Registries Directions 2021. 

This Data Provision Notice allows for the continuing operation of the NDRS by NHS Digital. Data providers should continue to make their submissions of data in the same manner as they did prior to 1 October 2021 and using the same IT systems.

Under section 259(1)(a) of the 2012 Act, this Notice is served in accordance with the procedure published as part of the NHS Digital duty under section 259(8) on the data provider organisations specified in Appendix A of the Data Provision Notice (who are required to provide the data sets identified in this appendix.

Under section 259(1)(b) of the 2012 Act, the following non health or care public body providers on whom this Notice is served are requested to provide NCARDRS data, where it is available, in accordance with the Data Specification in Appendix B of the Data Provision Notice. These providers include:

• Private health care providers
• The British Pregnancy Advice Service (BPAS)
• Organisations that hold or operate Congenital Anomaly registers.

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

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 ).