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NDRS NICPR
On 1st July 2025 the National Disease Registration Service (NDRS) launched the National Inherited Cancer Predisposition Register (NICPR) for England.
There is a designated webpage for this on the NDRS website found here, including an FAQ style document called 'Supporting information'.
A patient information leaflet can be found here.
The team hosted a webinar in June 2025 and the recording of this can be viewed here. The slide deck is available below.
The UK Cancer Genetics Group is fully supportive of the work of the National Disease Registration Service (NDRS) and delighted that the National Inherited Cancer Predisposition Register (NICPR) is live and operational for our patients. This resource will enable the UK community to improve and standardise the care of patients with rare single gene changes which increase their chance of developing hereditary tumours. Carriers of cancer susceptibility genes should continue to be managed according to the nationally recommended management programmes advised by the cancer genetics community which are available here: https://www.ukcgg.org/information-education/ukcgg-leaflets-and-guidelines and/or follow the advice and guidance given to them by their regional genetics service. Only very high risk breast and bowel screening is arranged nationally through centralised registers. All other carriers need to have their management arranged via their local services.
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