Question to the Department of Health and Social Care:

To ask His Majesty's Government, in light of the recommendations of European reference network on genetic tumour risk syndromes, whether they will review breast screening for women with neurofibromatosis type 1 for annual MRI from age 30 to 50.

Patients with the complex form of neurofibromatosis type 1 (NF1) are seen in the dedicated service centres for complex NF1, who will routinely advise them of their higher risk of breast cancer, and provide support accordingly.

There is currently no systematic way of informing those without the complex form of NF1 of their risk of breast cancer and whether they are eligible for screening when they turn 40. However, there are a range of different sources of information for patients including the NHS.UK, Childhood Tumour Trust and Nerve Tumours UK websites.

National Institute of Health and Care Excellence guidance does not address NF1 specifically but does state that people with certain genetic conditions should be referred to a geneticist to consider their risk, and may qualify for annual breast screening between ages 40 to 50 years old.

The recommendations of the European Reference Network on Genetic Tumour Risk Syndromes were issued in 2023 and, in response, the UK Cancer Genetics concluded that the evidence places most women with NF1 in the moderate-risk category, and recommended annual mammography from ages 40 to 49 years old, followed by entry into the routine NHS Breast Screening Programme from the age of 50 years old, unless additional risk factors place the individual in a higher-risk category.