Last year, the 10-Year Health Plan was published following a national conversation to make the National Health Service work better for people.

We know that significant unmet need remains for people living with rare diseases, and in February this year we published the England Rare Diseases Action Plan 2026 to highlight how delivery of the 10-Year Health Plan will address challenges for people living with rare diseases. The England Rare Diseases Action Plan 2026 is available at the following link:

https://www.gov.uk/government/publications/england-rare-diseases-action-plan-2026/england-rare-diseases-action-plan-2026-main-report

The Department invests over £1.7 billion each year on research through the National Institute for Health and Care Research (NIHR). This includes the NIHR funded RareCare study which aims to better understand what causes delays to diagnosis so we can take steps to address this. The research includes looking at how we can measure time to diagnosis for rare diseases which includes those that are covered by Newborn Blood Spot (NBS).

Another example of NIHR funded research is the evaluation of test accuracy studies in NBS screening and rare disease settings. This project aims to provide guidance on the evidence needed to evaluate the accuracy of NBS screening to ultimately improve the quality of the available evidence base to support better decision making about new or modified screening programmes.

For very rare conditions, it is difficult to generate robust evidence to demonstrate the value of screening, because so few babies are affected. The UK National Screening Committee (UK NSC), which advises the Government on all screening matters, is working with experts and partner organisations to look at how to make it easier to develop the evidence needed to make robust recommendations on the addition of more rare diseases to the NBS screening programme.

Information about how the UK NSC makes screening recommendations, and how stakeholders and members of the public can be involved, is available at the following link:

https://www.gov.uk/government/collections/uk-nsc-evidence-consultations-and-reviews

The UK NSC’s terms of reference are available online and can be found via the following link:

https://www.gov.uk/government/organisations/uk-national-screening-committee/about#terms-of-reference

These were last reviewed and updated in 2022. The terms of reference are set by the four United Kingdom health departments and are signed off by the four chief medical officers.

In the last few years, the UK NSC has recommended lung cancer screening, newborn screening for tyrosinaemia type 1, human papillomavirus self-sampling in under-screened women in the Cervical Screening Programme, research activity into rare diseases such as spinal muscular atrophy and severe combined immunodeficiency, the extension of intervals for diabetic eye screening, the use of DNA in the mother’s blood in the Fetal Anomaly Screening Programme, digital pathology in the cancer screening programmes, and extra tests for Edwards syndrome in pregnancy. It has also worked with partners to develop a very large trial on artificial intelligence in breast screening.

The UK NSC uses international published evidence from all across the world. Some countries or regions reportedly screen for a condition when it is only at the pilot or research stage. Some ‘screening programmes’ just test for a condition rather than being end-to-end quality-assured programmes that include diagnosis, treatment, and care. And screening in some countries is delivered regionally, or even just by individual hospitals, rather than nationally. They are therefore not directly comparable to the national screening programmes offered in the UK.

The UK NSC last reviewed screening for metachromatic leukodystrophy (MLD) in 2025. At the November 2025 UK NSC meeting, committee members concluded that there was not enough evidence to support newborn screening for MLD. However, members agreed that MLD would be a good candidate for inclusion in a multi-condition in-service evaluation (ISE) within the UK newborn blood spot screening programme, called EquipoISE. Full details of this review, including the evidence that was considered, are available at the following link:

https://view-health-screening-recommendations.service.gov.uk/metachromatic-leukodystrophy/

EquipoISE is a proposed rolling, multi-condition ISE embedded within the NHS NBS screening programme that would help the UK NSC make timely evidence-based recommendations on multiple rare conditions. EquipoISE would evaluate multiple conditions simultaneously, sharing a single research infrastructure. This would significantly reduce costs and setup time, rather than conducting expensive, one-off studies for each individual rare condition.

The UK NSC is using EquipoISE in its work with experts and partner organisations to look at how to make it easier to develop the evidence needed to make robust recommendations on the addition of more rare diseases to the NHS NBS screening programme.

UK NSC members and Department officials met with stakeholders, including ArchAngel MLD Trust, the MPS Society, MLD Support UK, and the Newborn Screening Collaborative, in February this year.

On 28 November, the UK National Screening Committee opened a 12-week public consultation on a draft recommendation on screening for prostate cancer. We anticipate a final recommendation in early 2026. After which, my Rt Hon. Friend, the Secretary of State for Health and Social Care, will make a decision on whether to accept the recommendation, and what next steps are needed. Any policy developed from the recommendation will be supported by an equality impact assessment to ensure that possible health inequality that could be caused by the policy will be mitigated against.

The UK National Screening Committee (UK NSC) is currently re-examining the evidence for sudden cardiac death screening in young people and will open a public consultation on this in the spring.

The UK NSC secretariat is not aware of the audit referred to in this question. However, as the literature review needs to be completed and analysed before a consultation is published, any evidence published in February of this year will not be part of the UK NSC consultation.

Each year, over 15 million people are invited for screening by National Health Service screening programmes, with over 10 million taking up the invitation. Through our NHS screening programmes, we can reduce mortality and morbidity from cancer and other conditions in the population who appear healthy and have no symptoms, by detecting conditions at an earlier, more treatable stage.

The Government is advised on all screening matters by the UK National Screening Committee (UK NSC), an independent scientific advisory committee which is made up of leading medical and screening experts. It is only where there is robust evidence that an offer to screen provides more good than harm that a screening programme is recommended.

Following its expanded remit, in 2022, the UK NSC recommended lung cancer screening to people between the ages of 55 and 74 years old who smoke or have previously smoked, a lifestyle related risk factor. The NHS Lung Cancer Screening Programme is being rolled out across England.

During its three-month open call for topics, the UK NSC welcomes proposals that cover population screening or targeted screening topics. Any individual or organisation can submit a topic to the UK NSC to consider. The UK NSC will consider whether the proposal is within the UK NSC remit and, if so, how the topic should be explored further.

The Government is taking men’s health seriously and we want to find the best way of reliably screening for prostate cancer. We are guided by the independent scientific advice of the UK National Screening Committee who are consulting on a draft recommendation relating to prostate cancer screening. However, as there is currently no prostate cancer screening programme for men, 100% of men in England who undergo prostate-specific antigen testing do so outside of a formal screening programme.

We have full confidence in the UK National Screening Committee's evidence-based approach, which includes a 12 week public consultation to inform the findings even further. If new peer reviewed published evidence is submitted to the consultation it will be considered before a final decision is made on prostate cancer screening.

The Secretary of State for Health and Social Care (Wes Streeting MP) will consider the final recommendation of the UK National Screening Committee (UK NSC) on screening for prostate cancer when it is received. At that point, he will decide on implementation, including any changes to guidance around testing that may be required.

It is anticipated that the final recommendation will be provided in early 2026 after the conclusion of a 12-week consultation which opened on 28 November 2025. This seeks views on an evidence review and a draft recommendation to:

• offer a targeted national prostate cancer screening programme to men with confirmed BRCA1/2 gene variants every two years, from 45 years old to 61 years old;
• not recommend population screening;
• not recommend targeted screening of Black men;
• not recommend targeted screening of men with family history; and
• collaborate with the Transform trial team to answer outstanding questions on screening effectiveness for black men and men with a family history as soon as trial data becomes available, and await results of the study to develop and trial a more accurate test than PSA alone, to improve the balance of benefit and harm of screening.

The article Targeted Prostate Health Checks, a Novel Screening System to Identify Men at Risk of Prostate Cancer: Real-world Evidence from More than 18 000 Prostate-specific Antigen Tests was published after the UK National Screening Committee (UK NSC) completed its formal modelling report as part of its evidence review into prostate cancer screening. The UK NSC Secretariat has read the report and discussed it with the Chair of the committee in relation to the prostate cancer screening recommendation.

The UK National Screening Committee is currently examining the evidence for screening for risks of sudden cardiac death and will open a public consultation to seek comments from members of the public and stakeholders on this in due course.

The UK National Screening Committee (UK NSC) received two evidence review reports about screening for prostate cancer and is considering them alongside experts. Subject to no further revisions being required, a public consultation will start this calendar year. This will run for three months as usual, and the UK NSC will then make a recommendation on prostate cancer screening. Once the recommendation is made, ministers will consider whether to accept it or not.

The UK National Screening Committee does not run its own trials. The committee is currently awaiting the findings of an independent trial into Group B Streptococcus, which concluded its recruitment phase in 2024. Neither the committee nor my Rt Hon. Friend, the Secretary of State for Health and Social Care have any influence over the date of publication for this independent trial.

Professor Sir Mike Richards was appointed as Chair of the UK National Screening Committee (UK NSC) on 11 March 2022. Appointments to the UK NSC are made in line with the principles of public appointment as set out by the Office of the Commissioner for Public Appointments. The first term of Professor Sir Mike Richards’ appointment is due to come to an end on the 10 March 2025 and a chair’s appraisal will be carried out by the English Chief Medical Officer to determine whether the appointment should be extended for a second term. The appointment can be extended up to three terms, not exceeding 10 years.

The UK National Screening Committee last reviewed chronic obstructive pulmonary disease (COPD) in 2018, and recommended against a national screening programme for three reasons:

• the lack of an accurate test to detect the condition at an early stage;
• it is not known if medicines for COPD are effective in people with mild symptoms; and
• the best treatment for early COPD is to stop smoking, but people with few or no symptoms may not be willing to do this.

The Secretariat hopes to be able to commission a further evidence update within the next three years.

Recruitment to the Group B Streptococcus trial undertaken by the University of Nottingham has ended. The researchers are analysing the data and will draft a report in due course.

The UK National Screening Committee’s Secretariat is in close and regular contact with the researchers. The committee will review the evidence from the trial, once the report is available.

The UK National Screening Committee reviewed screening for spinal muscular atrophy in June 2023. While acknowledging recent developments, it found that more evidence was needed to assess how screening might work safely in the United Kingdom.

Its recommendation was to develop a new cost effectiveness modelling study for the UK screening context, as well as start scoping in-service evaluation work in live services in the National Health Service in the UK.

Planning is now underway for the modelling and in-service evaluation, which will help to address these uncertainties and unanswered questions. The UK National Screening Committee will continue to engage with spinal muscular atrophy stakeholders to help shape and input into the work and will keep the public updated via blog articles and ongoing stakeholder engagement.

The UK National Screening Committee reviewed screening for spinal muscular atrophy in June 2023. While acknowledging recent developments, it found that more evidence was needed to assess how screening might work safely in the United Kingdom.

Its recommendation was to develop a new cost effectiveness modelling study for the UK screening context, as well as start scoping in-service evaluation work in live services in the National Health Service in the UK.

Planning is now underway for the modelling and in-service evaluation, which will help to address these uncertainties and unanswered questions. The UK National Screening Committee will continue to engage with spinal muscular atrophy stakeholders to help shape and input into the work and will keep the public updated via blog articles and ongoing stakeholder engagement.

In June 2023, the UK National Screening Committee (UK NSC) recommended that a modelling study be carried out alongside an in-service evaluation of spinal muscular atrophy (SMA) screening in the National Health Service. Around 70 babies a year are born with SMA in the United Kingdom (around 1 in every 10,000 live births), with approximately 60% of those having type 1 SMA (SMA1).

The new model will help define important issues for the in-service evaluation, while the evaluation will be used to collect data to feed into the model and test its assumptions. This important work will give the UK NSC the evidence it needs to assess how newborn screening for SMA might work safely in the UK.

Work is still in the planning stages therefore timescales are not established yet. The UK NSC will keep ministers informed, and the public up to date on progress via its blog and ongoing stakeholder engagement.