NHS England Expands Genetic Cancer Risk Register Programme

NHS England is advancing a national programme to identify individuals with an increased inherited risk of cancer by building a comprehensive genetic register. This initiative is designed to support earlier detection and tailored care for people with genetic predispositions to cancer.

The National Inherited Cancer Predisposition Register (NICPR) was introduced on 30 June 2025 through collaboration between the National Disease Registration Service and NHS England’s genomics and cancer teams. The register compiles data on people in England who have pathogenic or likely pathogenic variants in approximately 120 cancer susceptibility genes, linking this information with national screening and cancer registration datasets.

By connecting genetic data with other health records, the NICPR is intended to facilitate service planning, referrals for screening, research, clinical audits, and ongoing monitoring of health outcomes. NHS England stated that the register will allow comparison of patients’ genes, including those of cancer patients and their relatives, to support earlier screening, personalised treatment, and preventive care.

This national register builds on earlier efforts such as the Lynch syndrome register, which has already identified thousands of individuals with Lynch syndrome and provided them with routine preventive screening. The Lynch syndrome register has enabled more than 12,000 people to receive additional bowel screening after being identified as at higher risk.

What the numbers show

• The NICPR was launched on 30 June 2025
• Over 12,000 people with Lynch syndrome have received extra bowel screening
• Lynch syndrome screening prevents bowel cancer in 40–60 out of every 100 people with the condition
• More than 25,000 saliva test kits have been requested under the NHS Jewish BRCA Testing Programme
• 235 people (2.1%) tested positive for a BRCA mutation through the programme

The NHS already provides genetic testing for cancer risk, including BRCA testing for individuals with Jewish ancestry or a relevant family history, through the Genomic Medicine Service. Under the NHS Jewish BRCA Testing Programme, over 25,000 saliva test kits have been distributed, with around 11,000 processed and 235 individuals identified as carrying a BRCA mutation.

People found to have BRCA mutations through this programme are offered early access to screening, preventive surgery, medication, or advice on lifestyle changes. The integration of these genetic testing programmes with the NICPR is intended to streamline identification and management of inherited cancer risk across England.

Data from the Lynch syndrome register indicate that screening can prevent bowel cancer in 40 to 60 out of every 100 people with the condition. This outcome highlights the potential benefits of early identification and intervention for individuals with inherited cancer risk.

Through the NICPR and related initiatives, NHS England is expanding its capacity to support preventive care, research, and clinical management for people at increased genetic risk of cancer. These programmes are designed to enable more targeted screening and treatment pathways based on individual genetic profiles.

* This article is based on publicly available information at the time of writing.