Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure that the new National Inherited Cancer Predisposition Registry is accessible to women at increased risk of breast cancer.

The National Inherited Cancer Predisposition Registry (NICPR), which is part of the National Disease Registration Service (NDRS), records information on individuals who have confirmed pathogenic or likely-pathogenic variants in any of the approximately 120 cancer predisposition genes tested for in the National Health Service. These individuals must be referred to one of the Regional Clinical Genetics Services in England for genetic counselling and management. NDRS works closely with these services and the UK Cancer Genetics Group to ensure that all eligible individuals, including women at increased genetic risk of breast cancer, are captured in the NICPR. To support this, NDRS provides regular feedback to Regional Clinical Genetics Services through quarterly reconciliation audits, to confirm that all relevant individuals are included and have access to appropriate clinical support.

NICPR also supports referrals into the Very High Risk Breast Screening Programme, where relevant. In addition to those with confirmed genetic variants, NDRS also supports referral of women in the risk-equivalent category, for example those with a strong family history of breast cancer but who have not undertaken a definitive genetic test. Information on these women is submitted using a similar portal as for NICPR referrals.