Transparency data

UK NSC draft minutes November 2025

Updated 8 January 2026

These minutes are draft.

This meeting was held on 27 November 2025 at Victoria Street, London, and via Microsoft Teams.

Attendees

Members

• Professor Sir Mike Richards – Chair
• Dr Graham Shortland – Consultant Paediatrician (Vice-Chair)
• Professor Natalie Armstrong – Implementation Scientist 
• Dr Philippa Brice – Patient and Public Voice (PPV) (Co-opted Member)
• Eleanor Cozens – PPV
• Heidi Douglas – Public Health Consultant (Co-opted Member)
• Dr Ros Given-Wilson – Chair, Adult Reference Group (ARG)
• Dr Sharon Hillier – Chair, Fetal, Maternal and Child Health Group (FMCH)
• Professor Chris Hyde – Public Health Specialist
• Professor Anneke Lucassen – Clinical Geneticist
• Professor Katherine Payne – Health Economics (Co-opted Member)
• Dr Bethany Shinkins – Test Expert
• Professor Anne-Marie Slowther – Clinical Ethicist
• Professor Sian Taylor-Phillips – Chair, Research and Methodology Group (RMG)

UK Health Department officials 

• Carol Beattie – Senior Medical Officer, Department of Health, Northern Ireland
• Hayley Pareas – Screening Policy Manager, Department of Health and Social Care (DHSC)
• Heather Payne – Senior Medical Officer, Maternal and Child Health, Welsh Government
• Ray Smith – Head of Screening Policy, DHSC
• Tsitsi Muchayingeyi – Screening Policy Lead, DHSC
• Tasmin Sommerfield – National Screening Oversight, NHS Scotland
• Matthew Tester – Health Protection Policy, Welsh Government
• Helen Tutt – Health Protection Policy, Welsh Government
• Louise Whyte – Population Health, Scottish Government

Observers 

• Martin Allaby – Consultant in Public Health, National Institute for Health and Care Excellence (NICE)
• Harrison Carter – Screening Director, NHS England
• David Elliman – Clinical lead for NHS Newborn Blood Spot Screening Programme
• Elizabeth Luckett – Senior Screening & Immunisation Manager, NHS England
• Diane Matthews – Public Health, States of Guernsey
• Zosia Miedzybrodzka – Clinical Lead, Scottish Genomics Network
• Lisa Saunders – Public Health, Isle of Man
• Susan Spillane – Assistant Director, Health Information and Quality Authority (HIQA) Ireland

Secretariat    

• Talia Boshari – Public Health Registrar
• Andy De Souza – Senior Evidence Review Manager, Targeted Screening
• Rebecca Dliwayo – Senior Evidence Review Manager, Horizon Scanning
• Jo Harcombe – Head of UK NSC Information and Engagement Management
• Mike Harris – Head of UK NSC Transparency and Public Understanding
• Peggie Huangfu – Senior Evidence Review Manager, Targeted Screening
• Ailsa Johnson – Secretariat Network Convenor
• Silvia Lombardo – Modelling Lead
• Anne Mackie – Director of Programmes, UK National Screening Committee
• John Marshall – Evidence Lead
• Carolina Martinelli – Targeted Screening Lead
• Zeenat Mauthoor – Secretariat Expert Committee and Policy Liaison Manager
• Omaer Syed – Senior Evidence Review Manager, Horizon Scanning
• David Thompson – Senior Evidence Review Manager
• Katy Town – Horizon Scanning Lead
• Cristina Visintin – Research Lead

Invited

• James Davison – Consultant in Paediatric Metabolic Medicine, Great Ormond Street Hospital for Children NHS Foundation Trust (attended part of the meeting)
• Olivier Johnson – Economic Advisor, DHSC (attended part of the meeting)
• Cathy Morgan – Director Secondary Prevention, DHSC (attended part of the meeting)
• Hassan Naqeebi – Economic Advisor, DHSC (attended part of the meeting)
• Marianne Scholes – Economic Advisor, DHSC (attended part of the meeting)

Welcome and apologies

The Chair, Prof Mike Richards, welcomed all to the meeting.

The Chair reminded attendees of the confidential nature of the discussions, presentations and papers for the meeting and reiterated that these should not be communicated outside the meeting until their publication on the UK NSC website. 

The meeting was attended by all members and quorate.

A warm welcome was also extended to 3 co-opted members from the reference groups, who have been appointed for an interim period to assist the UK NSC in its work:

• Philippa Brice, Patient and Public Voice (PPV): co-opted from the FMCH group
• Heidi Douglas, Public Health Consultant: co-opted from the ARG
• Katherine Payne, Professor of Health Economics: co-opted from the RMG

Call for any new declarations of interests

No new declarations of interest relevant to the meeting were raised.

Minutes of the last meeting

The committee approved the minutes from 26 June 2025 meeting as a true and accurate record.

There were 3 actions from the June meeting:

Action 1: The UK NSC to publish a blog detailing the work undertaken to look at spinal muscular atrophy (SMA) which will include the SMA model report and other relevant evidence products – completed

Action 2: UK NSC to open a public consultation on severe combined immunodeficiency (SCID) – completed and this closed on 27 October. The evidence team is reviewing comments and will share this with the FMCH group at the next meeting.

Action 3: Evidence map on urea cycle disorders to be shared with UK NSC members and recommendation to be agreed and if possible, to complete under Chair’s Action – completed

Matters arising – Director’s update: draft prostate cancer screening recommendation for public consultation

The Chair introduced the item of prostate cancer screening to all, noting its significance and high profile.

Attendees were informed that the committee and the ARG had discussed the Sheffield Centre for Health and Related Research (SCHARR) modelling study that estimated the clinical and cost effectiveness of various prostate cancer screening strategies at several dedicated and closed workshops prior to this meeting. This was to ensure that members of the committee and reference group were able to raise and examine queries about the model’s predictions and have constructive discussions in order to be able to provide impartial, evidence-based draft recommendations that may then go onto become government policy.

The Chair reminded all that the screening strategies discussed were draft recommendations and were to be publicly consulted on. A final recommendation is not expected to be made until 2026, after the ARG and the UK NSC have examined the consultation comments.

Prof Anne Mackie provided the committee with a confidential presentation where it was noted that prostate cancer is the most common cancer in men and the second most common cause of cancer deaths in men after lung cancer. It was reported that there are about 55,000 new cases and 12,000 deaths in the UK each year related to prostate cancer.

Post meeting note: on further examination of 2024 official national statistics the committee found that in the UK there are around 68,000 men diagnosed with prostate cancer each year, and 12,000 men die from it.

The UK NSC last reviewed the evidence for whole population screening for prostate cancer in 2020. The UK NSC at that time recommended that a population screening programme for prostate cancer should not be introduced as it did not meet several of the UK NSC criteria. These criteria exist in order to appraise the viability, effectiveness and appropriateness of a population screening programme to ensure that the health benefits of screening clearly outweigh the harms.

The screening test for prostate specific antigen (PSA) levels is known to be an unreliable test (in terms of the numbers of false positive and false negative results it produces in asymptomatic men) and there were concerns about the potentially high levels of overdiagnosis and overtreatment as consequences of false positive results from PSA screening, as well as the risks of false reassurance for men who receive false negative results. Details of the 2020 review can be found on the UK NSC prostate cancer screening recommendation page.

Since the 2020 review, there had been several publications of large long-term studies and growing interest and research to look at targeted and risk stratified screening for prostate cancer. In addition, the UK NSC’s remit was also expanded to consider targeted and risk stratified screening. This led to the UK NSC’s 2022 open call receiving a total of 6 submissions requesting that several different screening strategies for prostate cancer be explored. The proposed screening strategies that were submitted called for the UK NSC to look at:

i. population and risk stratified proposal for a national programme based on the PSA test for all men aged 45 to 70, with frequency of testing stratified by individual risk calculated from an initial, normal PSA, age, ethnicity and family history, initially yearly for high-risk men and 3 to 5-yearly for low-risk men. Men with an abnormal PSA would be referred according to current 2-week wait and National Institute for Health and Care Excellence (NICE) criteria for mpMRI prostate scanning

ii. targeted screening for Black men aged 45 to 70

iii. targeted screening proposal to screen men between 50 and 69 with a Charlson co-morbidity index (less than or equal to 3) using the Stockholm3 blood test

iv. targeted screening for BRCA gene variant carriers

v. targeted population screening programme for prostate cancer for men aged 45 to 70 who have a first-degree relative diagnosed with prostate, breast or ovarian cancer (relevant family history)

vi. targeted screening proposal using prostate specific antigen (PSA) testing and high-risk factors, such as family history and ethnicity, to screen for prostate cancer

The UK NSC held an expert-led evaluation meeting where all proposals submitted were examined. It was agreed that given the scope of the proposals for prostate cancer screening it would be sensible that the UK NSC commission a modelling exercise as part of the next steps for assessment as per the UK NSC evidence review process. By opting for a model, it would allow the UK NSC to make comparisons of the various screening strategies submitted, which in turn would help the UK NSC to make evidence-based recommendations about which approaches may offer the best balance of benefit and harm compared to current/usual care.

The economic model was developed by SCHARR using a wide range of scientific studies and official data. Clinical and technical experts including those on the committee, as well as patient and public voices representatives, helped shape the model. The model was then validated against 2 major studies on PSA testing for prostate cancer. This collaborative approach meant that the model was based on the best available evidence and reflected real-world experience.

An infographic designed by Cancer Research UK (CRUK) was presented to the committee.

Post meeting note: the infographic can be downloaded from the UK NSC Blog article published on 28 November 2025.

Prof Mackie talked through the infographic which included up to date evidence on diagnostics (MRI) and treatments (robotic surgery). Based on European trial data, for every 1,000 men aged 50 to 60 who are offered a one-off PSA screening test, whole population screening would lead to:

• 100 men having a positive PSA test result and 34 having a positive MRI and receiving a biopsy
• 28 men would be diagnosed with prostate cancer, but most would not benefit in terms of survival or metastasis prevention
• Many men undergoing unnecessary treatment, with associated harms such as incontinence, erectile dysfunction, and bowel issues
• 2 lives being extended

This highlighted how PSA used as a screening test for whole populations has significant limitations and can cause high levels of overdiagnosis and harms.

The findings of the SCHARR model were then presented to the committee (detailed information about the model’s methods and conclusions were covered in the coversheet and narrative document), with which the committee were content. The committee noted that the draft recommendations to be consulted on and to seek views were:

• against population screening for men (at any age) – this strategy would lead to high overdiagnosis (as outlined in the infographic) and would be seen as causing more harm than good
• against screening for Black men – although the committee noted that while Black men were reported to have a 1 in 4 lifetime risk of having prostate cancer compared to a 1 in 8 for White men, there was still very limited data on the effectiveness of screening Black men and on the aggressiveness of these cancers; it was hoped  that the TRANSFORM trial will help provide more evidence in a couple of years for a targeted screening approach
• against screening for men with a family history – the evidence does not support a balance of benefits over harms
• in favour of screening men with a known gene variant of BRCA1 and BRCA2 every 2 years from age 46 to 61, as this appears to be the most promising strategy at the moment

The chair thanked Prof Mackie for the clear presentation of the draft recommendations and next steps and invited comments from the committee. Members of the committee firstly noted the extensive work that had been done to bring this to the meeting following various workshops and draft documents. Secondly, members recognised that prostate cancer is common and many are more likely to die with the cancer rather than from it because most prostate cancers are slow growing and do not shorten men’s lifespans. The harms and lifelong risks of certain procedures related to testing and treating cancers that may not have caused symptoms remains problematic.

The committee acknowledged that a diagnosis of prostate cancer can be devastating. The chair acknowledged and emphasised how committee members are all very keen to see continued developments in prostate cancer. They highlighted their duty to ensure that any screening is evidence-based.

While discussing the strategy to pursue men with a known BRCA gene variant, the committee was informed that not all men with a family history or BRCA2 gene variant are systematically tested and noted that many men with known BRCA2 variants are under some sort of variable levels of surveillance. The committee agreed and noted that it would require detailed and clear guidance on this issue if the BRCA screening strategy for prostate cancer is supported and recommended following the consultation.

The committee was informed that in regards to the BRCA Testing Criteria, the NHS Genomic Test Directories for each nation provide the current criteria for funded BRCA testing, acknowledging that NICE recommendations are broader than those currently available in practice. As part of the discussion on the draft recommendations which supports screening men with a known genetic variant, the committee flagged that such an approach may consequently increase the prevalence of direct-to-consumer genetic testing and guidance for GPs on handling such cases would be crucial should this draft recommendation be agreed. The committee also discussed the challenges in quantifying harms such as urinary leakage and erectile dysfunction, recognising that these can occur independently of prostate cancer.

Committee members and attendees were supportive of the draft recommendations. They were also very supportive of the TRANSFORM trial. The committee welcomed the news that the TRANSFORM trial team is working to recruit a significant number of Black men to assist with evidence in this group.

The chair asked committee members whether they were content to move the coversheet, narrative report and SCHARR model on prostate cancer to the consultation phase. All members were in agreement and welcomed a public consultation on prostate cancer screening.

It was agreed that the public consultation on the draft prostate cancer screening recommendation would open on Friday 28 November and close on 20 February 2026. Responses to the consultation will be discussed and considered by the ARG ahead of the UK NSC meeting in March 2026, when the committee aims to make a final recommendation.

The chair expressed his appreciation to all colleagues involved in developing the prostate cancer papers and the efforts to move this to consultation.

Action 1: UK NSC to open public consultation on prostate cancer

Newborn screening for metachromatic leukodystrophy

Dr Graham Shortland, vice chair and paediatric specialist member of the UK NSC, introduced this item regarding metachromatic leukodystrophy (MLD).

The UK NSC first reviewed this topic via an open call submission. An evidence map was then commissioned and the findings of this suggested that further work was justified. This led to the evidence summary being developed by Kleijnen Systematic Reviews Ltd and then publicly consulted on. The FMCH group has reviewed the document in development as well as the consultation comments submitted, which have reflected that further evidence on newborn screening for MLD is needed.

Dr David Thompson, UK NSC Secretariat, provided an overview of the evidence summary for MLD. MLD is a rare, progressive neurodegenerative disease with an estimated UK incidence of 1 in 40,000 live births. MLD is subdivided into late infantile, juvenile, and adult forms. Late infantile is the most severe and common form of MLD.

The comments and themes from the consultation were discussed and the following points highlighted:

1. The majority of comments were submitted from the public and the UK NSC acknowledged these tragic and personal accounts and recognises that this is a devastating condition.
2. International studies were considered but their application may not be generalisable to the UK context. It was noted that the reviewers found no published evidence from the Norwegian screening programme. However, the UK NSC is in contact with the Norwegian programme to gather more information as it becomes available. The UK NSC awaits further published evidence from the other countries piloting MLD screening.
3. Concerns were raised regarding the UK NSC approach to Libmeldy (treatment), which is NICE approved. However, NICE’s scope is to treat symptomatic and presymptomatic MLD patients, but this does not consider the consequences of screening a whole population to find individuals who would be offered treatment. The roles of NICE and the UK NSC therefore differ when looking at treatment.
4. The UK NSC’s approach includes the use of indirect evidence. However, the included studies had limitations, which were: (1) babies with screen-positive results are not necessarily the same as those identified via cascade testing, and (2), the available indirect evidence is small in volume and has methodological limitations (as described in the report), so even on its own merits it is a fragile basis for a positive recommendation.
5. The UK NSC’s Blood Spot Task Group (BSTG) is looking at practical and innovative approaches to evidence development in rare diseases and so will help in working towards encouraging further research in this area. In the meantime, MLD will remain on the UK NSC list of regular reviews.
6. The importance and challenges of processing or incorporating comments about direct evidence was highlighted, recommending that the wording of the recommendation be amended to specify that there is a lack of published evidence. Challenges in rare disease screening were discussed and highlighted that many gaps can only be answered through practice. It was suggested that MLD could be considered as a candidate for expanded in-service evaluation (ISE) in newborn screening, given current gaps in research and limited published evidence.
7. The committee discussed the effectiveness of the treatment, noting that although clinicians report positive outcomes for asymptomatic or early cases, there is insufficient evidence in the screening population, and the long-term effectiveness remains uncertain.
8. The committee acknowledged the need to clarify the difference between a well child with MLD detected by screening and one detected via a symptomatic sibling, as NICE guidance applies to the latter. Clearer wording is needed to make this distinction obvious to stakeholders.

The committee agreed that based on the current volume of evidence on the screening test and the treatment, in the context of a screening programme, the UK NSC does not recommend newborn screening for MLD. Additional research and evaluation are required to explore the case for screening further. To address the challenges associated with evidence generation for rare diseases in newborn screening, the UK NSC is working with partners to develop plans for a multi-condition ISE within the UK newborn blood spot screening programme, termed EquipoISE. MLD has been identified as a good candidate for inclusion in this type of evaluation, which could provide valuable information on the performance of an MLD screening algorithm in UK newborns. The discussions with partners are ongoing.

The UK NSC expressed its sincere appreciation, as well as its sympathy, to all the personal and tragic accounts that were submitted by the public for this consultation. The UK NSC recognises the tragic impact that this devastating condition can have and takes this into account.

Adult screening for dementia

Rebecca Dliwayo, UK NSC Secretariat, presented an update on the review and public consultation for population screening for dementia.

Dementia is one of the health conditions for which evidence is regularly reviewed by the committee. The last evidence summary, undertaken in 2019, highlighted uncertainties regarding the natural history of the condition, available screening tests and treatments, and the acceptability of a universal screening programme.

The current evidence map revisited the evidence base to identify any new developments that warranted a change in the existing recommendation. Findings showed that, although there was a substantial amount of new research, most screening tools remained questionnaire based and lacked clinical utility for population screening. Furthermore, non-pharmacological interventions tend to be complex/experimental and lack links with population screening. Recently approved pharmacological interventions, such as donanemab and lecanemab, will not be rolled out nationally due to limited benefits.

The key themes that emerged during the public consultation showed overall support for the recommendation not to introduce population screening for dementia and included requests for targeted screening approaches for high-risk groups, and the need for ongoing monitoring of new developments. The UK NSC will continue to conduct horizon scanning activities, invite stakeholders to submit new evidence, and encourage proposals for targeted screening through the open call for topics.

The committee extended its appreciation to all who submitted comments as part of the dementia consultation. Dementia is a profoundly challenging disease. However, without an accurate and reliable test, it is not clear whether early detection through screening would provide any benefit. Furthermore, with limited treatment there is considerable concern that a population screening programme would do more harm than good.

The UK NSC recommended that based on the evidence found, a population screening programme for dementia should not be introduced.

Digital cytology in cervical screening and triage – next steps post evidence map

Silvia Lombardo, UK NSC Secretariat, provided an update regarding 2 evidence maps recently conducted on programme modifications within the cervical screening programme:

• the use of triage tests (excluding genotyping, which is to be covered in a separate evidence map)
• the application of digital cytology within the cervical screening programme

The topics originated from the open call for new topics and were found to be within the UK NSC remit. Therefore an evidence map was commissioned which was completed and shared with the ARG and the committee for consideration. Based on the volume and type of available evidence identified from the evidence maps, it appeared justifiable that further evidence synthesis work should be undertaken. Following review by the ARG, the committee was asked to endorse the recommendation to proceed with evidence summaries for both the use of triage tests (including genotyping) and digital cytology.

Committee members discussed and approved both recommendations and agreed that submitters should be informed of this development.

Action 2: The UK NSC Secretariat should commission evidence summaries on the use of triage tests (including genotyping) and digital cytology and to inform the submitter on the progress of the 2 open call topics.

Heart valve disease

Peggie Huangfu, UK NSC Secretariat, provided an update on the proposal to consider screening for heart valve disease (HVD) among older adults in England.

HVD is not included in the UK NSC’s regular review list and was originally raised as a new topic during the 2022 open call. Following consideration by the expert evaluation group, it was agreed that an evidence map should be conducted. The findings of the evidence map were shared with the ARG.

The UK NSC confirmed that based on the findings the current evidence does not justify commissioning further synthesis work on HVD screening among older adults. It was therefore recommended that no further work should be undertaken at this time. Since this topic is not within the regular UK NSC review cycle and has not been previously reviewed, any future consideration should be resubmitted through the open call for new topics if significant new developments arise.

Action 3: The UK NSC Secretariat to inform the submitter of heart valve disease of the outcome of this proposal (no further work).

EquipoISE (multi-condition newborn blood spot screening ISE project)

The committee welcomed Dr James Davidson, Consultant in Inherited Metabolic Diseases at Great Ormond Street Hospital to present the paper on EquipoISE.

The EquipoISE proposal is a multi-condition ISE in newborn screening settings, within existing frameworks, encompassing retrospective analysis using the dried blood spot (DBS) biobank and prospective ISE. The aim of the project is to provide robust evidence to support the potential expansion of the newborn screening programme, including the integration of genetic-first and new biomarker approaches. The alignment of the EquipoISE proposal with current government policy, notably the NHS 10-year plan, was noted.

The value of early diagnosis, especially for rare diseases, and the need to expand and improve the screening process was emphasised. Early, pre-symptomatic detection is essential for improving outcomes and facilitating access to therapies, particularly in cases where transformative genetic treatments are available.

The presentation highlighted that current dried blood spot technology allows for screening of approximately 100 disorders and that the Generation study examines more than 200 conditions.

It was acknowledged that measuring benefits and harms is complex, with both retrospective and prospective approaches presenting data quality and acceptability challenges as well as there being issues on consent and challenges in gathering evidence for rare diseases.

The committee was supportive of this work, recognising that the project was still at an early stage and noting that further work and resource requirements will be needed. However, it agreed that this would be revolutionary in being able to move newborn screening forwards. Committee members were invited to engage and help inform future developments of this project.

The committee thanked James and the team for their ongoing work, and it was agreed that a collaborative 4 Nations approach would be beneficial. The committee, in partnership with the UK NSC Secretariat, will continue engaging with potential partners and monitor developments on EquipoISE.

Action 4: The UK NSC supported the work on EquiopISE and suggested that a blog should be published to inform stakeholders of the UK NSC’s work on expanding newborn blood spot screening.

Additional breast screening for women with dense breasts

Cristina Visintin, UK NSC Secretariat, provided an update on the recent work concerning breast screening, particularly for women with dense breast tissue.

UK NSC has been reviewing the latest evidence for additional screening based on breast density, with stakeholders invited to comment and feedback on the systematic reviews.

Feedback was thorough and generally supportive of supplementary imaging but also suggested that more research should be undertaken.

A new breast screening working group, chaired by Dr Ros Given-Wilson, has been established, comprising stakeholders and subject matter experts to provide support for the development of a flexible future modelling study with clinical and cost-effectiveness outcomes. At the start the group will help in a project which aims to conceptualise the new model requirements that will be used to develop a detailed model plan outlining the proposed structure, assumptions, and inputs to be used in the decision model.

The committee expressed strong support for the ongoing work, recognising the complexity and rapid evolution in the field. The need for a responsive and adaptable approach was highlighted, given the pace of technological and methodological change in breast cancer screening.

Stakeholder activity update and UK NSC stakeholder review report

Mike Harris, UK NSC Secretariat, presented a summary of findings and recommendations from the recent UK NSC stakeholder engagement strategy review.

The UK stakeholder engagement strategy, which was first published 3 years ago following a recommendation from the Chief Medical Officer concerning the committee’s expanded remit in 2022, was scheduled for review. Accordingly, the strategy and associated activities were evaluated this year.

In February and March 2025, an online survey was conducted targeting individuals and organisations subscribing to the UK NSC recommendations pages, with further publicity via the UK NSC blog. The survey received approximately 200 responses. In July 2025, 3 focused online discussion groups were held, attended by a mix of stakeholders including PPV participants, and supported by the evidence team. The feedback from both the survey and discussion groups informed a summary report and recommended action plan.

The key findings included:

• stakeholders generally reported improved engagement with the committee over recent years
• the committee’s evidence-based approach, submission process, education and training activities (including seminars and masterclasses), PPV involvement, and blog updates received positive feedback
• main concerns included perceived lack of transparency and communication, occasional confusion regarding evidence requirements, and misconceptions about UK NSC processes and remit
• suggestions were made for clearer information, improved timelines, more clarity on decision-making, and enhanced communication, noting variability depending on topic and stakeholder

The committee reflected on transparency in stakeholder communications, noting a perception gap. Although the committee has increased output of blog articles to aid communication, it recognised that stakeholders may not feel sufficiently informed and challenges remain in effectively explaining the screening process.

The committee discussed potential improvements, including the use of infographics to answer common questions and clarify processes, as well as reiterating resource limitations.

It was agreed to:

• review and update online information to improve clarity and accessibility, including updating the homepage on GOV.UK to link to key UK NSC process and remit information

• simplify and clarify stakeholder proposal submission and consultation processes
• develop a series of blog articles to address any misconceptions and clarify committee work and collaborations
• explore options for DHSC approval to produce short animations explaining UK NSC processes in an accessible format

Action 5: Mike Harris to send the updated stakeholder engagement strategy once finalised to UK NSC members for review and sign-off prior to publication.

Fetal Maternal Child Health (FMCH) Group update

Dr Sharon Hillier, chair of the FMCH group, provided the UK NSC with a verbal update on the group’s confidential work including updates on the ongoing projects within the Blood Spot Task Group (BSTG) and MLD.

The committee noted the topics currently out for public consultation: cytomegalovirus, fragile X syndrome, intimate partner violence, and antenatal and postnatal mental health conditions.

A membership recruitment drive is also taking place with interviews scheduled next week.

Adult Refence Group (ARG) update

The ARG chair, Dr Ros Given-Wilson, provided a confidential update from the October meeting which provided the committee with an update on various conditions under review as well as confirming that the public consultation on bladder cancer screening has opened and that 2 more public consultations would soon be open.

Membership recruitment is currently taking place with interviews conducted last week and more scheduled for week beginning 1 December 2025.

Post meeting note: the UK NSC also opened public consultations on:

• Intimate partner violence, which opened on 26 November and will close on the 18 February 2026
• Diabetes type 2, which opened on 8 December and will close on 2 March 2026

Research and Methodology Group (RMG) update

Dr Sian Taylor-Philips, Chair of the RMG, gave a verbal update on the confidential work from the November meeting and confirmed that 4 new members have recently joined with expertise in risk-stratified screening, genomics and statistics.

Any other business

The committee noted that the public consultation to continue the ISE of newborn screening for severe combined immunodeficiency (SCID) in NHS services closed on 27 October 2025. The secretariat team will review comments and share with the FMCH group at its next meeting in January and update at the UK NSC March 2026 meeting.

The committee was also informed that in order not to delay communicating outcomes on 4 open call submissions which were due to complete imminently (and not to wait for the March 2026 meeting), chair’s action, with reference group agreement would be taken and then shared with members. The topics would be on:

• targeted screening for anal cancer screening in men who have sex with men
• programme modification proposal in relation to the NHS Bowel Cancer Screening Programme (BCSP) to include blood-based liquid biopsy triage tests for people who test positive on a faecal immunochemical test (FIT)
• programme modification proposal for lowering bowel cancer screening eligibility age to 40 years for people with learning disabilities
• targeted antenatal screening for the T.cruzi parasite that causes Chagas Disease in pregnant women from Latin America

Next Meeting

Thursday, 26 March 2026

Chair’s actions

Notification of chair’s actions on behalf of the committee following the meeting on 27 November 2025.

Action 1 – targeted anal cancer screening in men who have sex with men (MSM) (2022 open call submission) 

Initial status 

In 2022, as part of the UK NSC’s open call for topics, UK NSC received a proposal from the British Association of Sexual Health & HIV (BASHH) HPV Specialist Interest Group and the British HIV Association (BHIVA) which called on the committee to consider introducing a targeted screening programme for anal cancer in men who have sex with men (MSM) living with HIV and aged over 35 years.

The submitters suggested that earlier detection and treatment of high-grade squamous intraepithelial lesions (HSIL), a precancerous condition, would lead to significant reduction in rates of anal cancer in this high-risk group. The submitters based this suggestion following the publication of the 2022 Anal Cancer–HSIL Outcomes Research (ANCHOR) randomised controlled trial which demonstrated a 57% reduction in progression of HSIL to anal cancer in MSM living with HIV aged 35 years and over.

This submission had been submitted via the open call as a targeted screening candidate following the UK NSC’s expanded remit to look at targeted conditions. The UK NSC had previously examined the evidence for anal cancer screening in 2013 and 2017 but at a population level, and due to the lack of evidence in this group made a recommendation to archive this topic.

The UK NSC’s expert evaluation group examined the targeted screening proposal and agreed that an evidence map should be commissioned as the first step. Work was undertaken by researchers at Queen Mary University of London (QMUL) in July 2025 (delays to progressing this were due to various constraints at the host organisation relating to recruitment and finance). The evidence map looked to address 4 main questions: 

1. Are there any national or international guidelines or recommendations on targeted screening for anal cancer in MSM?
2. What is the volume and type of evidence available on the accuracy of screening tests used to detect anal cancer in MSM?
3. What is the volume and type of evidence available on the acceptability of a targeted screening programme to detect anal cancer in MSM?
4. What is the volume and type of evidence available on the harms and benefits of a targeted screening programme to detect anal cancer in MSM?

Reason for chair’s action 

The evidence map for anal cancer screening in MSM was shared with ARG members electronically in October 2025 for consideration. Following ARG comments and finalisation of the evidence map being needed, this was not ready to be tabled for the November UK NSC meeting. However, it was raised under AOB to inform members of its imminent arrival. In order not to delay the recommendation of this open call proposal being communicated to the submitter, it was agreed that chair’s action should be taken. 

The evidence map found that the volume and type of evidence related to targeted screening for anal cancer in MSM was primarily based on expert opinion rather than robust trial data when looking at existing guidance. Furthermore, although there was a substantial body of research on anal cancer screening, very few studies directly assessed the diagnostic accuracy of the screening test. Therefore the outcome of the evidence map is that further evidence synthesis on this topic is not justified at this point.

Decision 

The ARG and the UK NSC Chair noted the findings of the evidence map for targeted screening for anal cancer in MSM and agreed that no further work should be commissioned at this time. As this was an open call submission, any further evidence or consideration on the topic of anal cancer screening should be submitted via another open call proposal. In the meantime, the submitter should be notified of this outcome. 

Chair’s confirmation 

I confirm that I have taken Chair’s action in relation to the decisions recorded above.  

Signed: Prof Sir Mike Richards, Chair, UK NSC

Date: 5 January 2026 

Action 2 – modifying the NHS Bowel Cancer Screening Programme (BCSP) to include blood-based liquid biopsy triage tests for people who test positive on a faecal immunochemical test (FIT) (2024 open call submission) 

Initial status 

As part of the 2024 open call for topics, UK NSC received a programme modification proposal for the NHS BCSP. The proposal submitted by Pure Genetic Medical proposed that the current BCSP pathway could be modified to allow patients who receive a positive FIT result to be offered a blood test, ColonAiQ, before proceeding to a colonoscopy. This additional step in the pathway would allow people to have a less invasive test first, which would examine 5 bowel cancer methylation markers in one test to help detect advanced adenomas and early recurrence of bowel cancer rather than moving to colonoscopy following a FIT positive result.

The programme modification proposal was assessed by the UK NSC’s expert evaluation group, which agreed that an evidence map should be commissioned as the first step looking at liquid blood-based bowel triage tests.

The evidence map was commissioned and awarded to the National Institute for health and Care Research (NIHR) Bristol Evidence Synthesis Group (BESS) in May 2025. The evidence map focused on 3 questions:

1. What is the volume and type of evidence available on the accuracy of blood-based liquid biopsy tests used to triage people who screen positive on a FIT test for bowel cancer?
2. What is the volume and type of evidence available on the acceptability of blood-based liquid biopsy tests used to triage people who screen positive on a FIT test for bowel cancer?
3. What is the volume and type of evidence available in relation to the cost-effectiveness of blood-based liquid biopsy tests used to triage people who screen positive on a FIT test for bowel cancer?

Reason for chair’s action 

The evidence map looking at the use of blood-based liquid biopsy test was shared with ARG members electronically in August 2025 for consideration. Following ARG comments, additional work and finalisation of the evidence map, this was not tabled for the November UK NSC meeting. However, it was raised under AOB to inform members of its imminent arrival. In order not to delay the recommendation of this open call proposal being communicated to the submitter, it was agreed that chair’s action should be taken. 

The evidence map found that although blood-based liquid biopsy is an emerging and innovative test, studies considered as part of the literature search were not conducted in the UK and there were no studies identified that addressed questions 2 and 3. This means that at this time there is insufficient evidence to justify further evidence synthesis being commissioned. 

Decision 

The ARG and the UK NSC Chair noted the findings of the evidence map for blood-based liquid biopsy tests in the BCSP and agreed that no further work should be commissioned at this time.

Due to the innovative nature of blood-based liquid biopsy, the UK NSC’s horizon screening team commissioned NIHR Innovation Observatory to undertake a review of ongoing clinical trials on blood-based liquid biopsy tests. A total of 27 trials were identified to track for research outputs as part of internal activities. See Final Report: Horizon Scan for Bowel Cancer Screening Tests on the NIHR Innovation Observatory website.

Given the limited UK-based research, the UK NSC evidence team will also explore options to promote the need for further research and innovation on novel bowel triage tests. 

Chair’s confirmation 

I confirm that I have taken Chair’s action in relation to the decisions recorded above.  

Signed: Prof Sir Mike Richards, Chair, UK NSC

Date: 5 January 2026 

Action 3 – lowering bowel cancer screening eligibility age to 40 years for people with learning disabilities (2024 open call submission) 

Initial status 

As part of the 2024 open call for topics, UK NSC received a programme modification proposal from NHS England, asking the UK NSC to consider lowering the bowel cancer screening eligibility to 40 years old for people with a learning disability in the UK. In the UK currently, bowel cancer screening is offered to people from the age of 50 to 74 years every 2 years.

The submitters suggested that data published from the Learning from Deaths and Mortality Review (LeDeR) revealed that 15% of adults with a learning disability who died from bowel cancer were under the screening age of 50 years - and that based on NHS England guidance screening providers are legally obliged to make reasonable adjustments to reduce barriers to screening uptake amongst disabled people, including people with learning disabilities.

The UK NSC’s expert evaluation group examined the programme modification proposal and agreed that that an evidence map should be commissioned as the first step. Work was undertaken by researchers from Kleijnen Systematic Reviews Ltd in August 2025. The evidence map focused on 2 questions: 

1. What is the volume and type of evidence available on the natural history of bowel cancer in people with learning disabilities?
2. What is the volume and type of evidence available on the benefits and harms of screening people with learning disabilities for bowel cancer at a younger age than the general population?

Reason for chair’s action 

The evidence map for lowering bowel cancer screening eligibility age to 40 years for people with learning disabilities was shared with ARG members electronically in October 2025 for consideration. Following ARG comments and finalisation of the evidence map, this was not ready to be tabled for the November UK NSC meeting. However, it was raised under any other business to inform members of its imminent arrival. In order not to delay the recommendation of this open call proposal being communicated to the submitter, it was agreed that chair’s action should be taken. 

The evidence map found that although there were studies which addressed question 1 to indicate a potential relationship between learning disabilities and adverse outcomes related to bowel cancer, there were no relevant studies on the benefit and harms of screening people with learning disabilities for bowel cancer at a younger age than the general population, as it is set now. Therefore, the outcome of the evidence map is that further evidence synthesis on this topic is not justified at this point.

Decision 

The ARG and the UK NSC Chair noted the findings of the evidence map on lowering bowel cancer screening eligibility age to 40 years for people with learning disabilities and agreed that no further work should be commissioned at this time. As this was an open call submission any further evidence or consideration to modify the existing screening programme should be submitted via another open call proposal. In the meantime, the submitter should be notified of this outcome. 

Chair’s confirmation 

I confirm that I have taken Chair’s action in relation to the decisions recorded above.  

Signed: Prof Sir Mike Richards, Chair, UK NSC

Date: 5 January 2026  

Action 4 – Targeted antenatal screening for the T.cruzi parasite that causes Chagas disease in pregnant women from Latin America (2022 open call submission) 

Initial status 

In 2022, UK NSC received a targeted screening proposal which called on the committee to consider screening for the T.cruzi parasite that causes Chagas disease in pregnant women from Latin America.

Chagas disease is an infection caused by the parasite Trypanosoma cruzi, primarily found in Latin America (throughout Mexico, Central and South America). It is spread by an insect vector present only in rural areas of these regions. Once a person has the infection, they can remain infected for decades, often without symptoms or illness. A concern is that the infection can pass from infected mother to her baby during pregnancy or delivery (congenital transmission). Babies born with congenital Chagas disease may have a severe and life-threatening disease. Although most infections will be asymptomatic in early life, the disease can cause cardiac, neurological and/or gastrointestinal disease and cause death in later years.

In cities like London, where Latin Americans are the second fastest growing non- European migrant population, it is suggested that this poses a risk for many women who may be unaware of them carrying this infection.

The UK NSC’s expert evaluation group examined the new targeted screening proposal to screen for Chagas disease in women from Latin America and agreed that an evidence map should be commissioned as the first step. Work was undertaken by researchers at Kleijnen Systematic Reviews Ltd in June 2025 (delays to progressing this were due to various constraints at the host organisation relating to recruitment and finance). The evidence map focused on 4 questions: 

1. Are there any national or international guidelines or recommendations to screen for Chagas disease in pregnant individuals from Latin America?
2. What is the volume and type of evidence available on screening tests used to detect the presence of the T.cruzi parasite which causes Chagas disease in pregnant individuals from Latin America?
3. What is the volume and type of evidence available that demonstrates that treating screen-detected pregnant individuals for the presence of the T.cruzi parasite which causes Chagas disease provides better outcomes when compared to treatment offered following clinical detection at symptomatic stage?
4. What is the volume and type of evidence available on the benefits and harms of screening for the presence of the T.cruzi parasite to prevent Chagas disease in pregnancy?

Reason for chair’s action 

The evidence map for Chagas disease in pregnant individuals from Latin America was shared with ARG members electronically in December 2025 for consideration. To not delay a recommendation of this open call proposal being communicated to the submitter, it was agreed that chair’s action should be taken rather than wait for the March 2026 UK NSC meeting.

The evidence map found that although there are several guidelines that advocate for screening women from endemic countries for Chagas disease during pregnancy or at reproductive age, there is limited evidence on the efficacy of available treatments for screen-detected pregnant individuals. Additionally, there was no evidence found that demonstrated the harms and benefits of screening for the presence of the T.cruzi parasite to prevent Chagas disease in pregnancy. Therefore the outcome of the evidence map is that further evidence synthesis on this topic is not justified at this point.

Decision 

The ARG and UK NSC Chair noted the findings of the evidence map and agreed that no further work should be commissioned at this time. As this was an open call submission any further evidence or consideration to screen for Chagas disease should be submitted through another open call proposal. In the meantime, the submitter should be notified of this outcome. 

Chair’s confirmation 

I confirm that I have taken Chair’s action in relation to the decisions recorded above.  

Signed: Prof Sir Mike Richards, Chair, UK NSC

Date: 5 January 2026