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Diseases

Asked by Peter DowdLabourDepartment of Health and Social CareTabled Answered 19 May 2025UIN 51864

The question

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure that the (a) National Disease Registration Service and (b) National Congenital Anomaly and Rare Diseases Registration Service continue after the planned abolition of NHS England.

Answered by Ashley Dalton

Working under the UK Rare Diseases Framework, the Government is committed to improving the lives of those living with rare diseases. Digital data and technology are underpinning themes of the UK Rare Diseases Framework. We acknowledge the important role of the National Congenital Anomaly and Rare Disease Registration Service, part of the National Disease Registration Service, in underpinning the delivery of England’s Rare Diseases Action Plans. Further information about the National Congenital Anomaly and Rare Disease Registration Service is available at the following link:

https://digital.nhs.uk/ndrs/about/ncardrs

We are currently in the initial phases of scoping and designing a new integrated department that aims to enhance the efficiency and effectiveness of our healthcare system. The important role of the National Disease Registration Service will be taken into account as part of future plans.

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