Transparency data

UK NSC minutes November 2022

Updated 5 May 2023

These minutes are final.

This hybrid meeting was held at 39 Victoria Street, London, and online on 9 November 2022.

1. Attendees

1.1 Members

• Professor Sir Mike Richards – Chair
• Dr Graham Shortland – Consultant Paediatrician, Cardiff and Vale University Health Board, Noah’s Ark Children’s Hospital for Wales (Vice-Chair)
• Professor Natalie Armstrong – Implementation Scientist
• Eleanor Cozens – Patient and Public Voice (PPV)
• Greg Fell – Public Health Expert
• Professor Chris Hyde – Public Health Specialist, University of Exeter
• Professor Anneke Lucassen – Professor of Genomic Medicine, University of Oxford and Consultant Clinical Geneticist (present for first half of meeting)
• Dr Bethany Shinkins – Test Expert
• Professor Anne-Marie Slowther – Reader in Clinical Ethics, Warwick Medical School, University of Warwick
• Dr Ros Given-Wilson – Chair of the Adult Reference Group (ARG)
• Dr Sharon Hillier – Chair of the Fetal, Maternal and Child Health Group (FMCH)
• Professor Sian Taylor-Phillips – Chair of the Research and Methodology Group (RMG) and Data Scientist

1.2 Observers

• Evette Wade – Republic of Ireland
• Nick Hicks – National Co-ordinating Centre for Health Technology Assessment (HTA)
• Dr Sarah Byron – Centre for Health Technology Evaluation (CHTE) Programme Director, National Institute for Health and Care Excellence (NICE)
• Martin Allaby – Consultant in Public Health and Evidence-based Healthcare, NICE
• Deborah Tomalin – Director of Public Health Commissioning and Operations, NHS England (NHS E)
• Dr Tracy Owen – Consultant in Public Health, Public Health Agency Northern Ireland
• Professor Zosia Miedzybrodzka – Clinical Lead of the Scottish Genomics Network
• Clare Walker – Isle of Man
• Prof Peter Bradley – Government of Jersey
• Nicola Brink – State of Guernsey

1.3 UK Health Department officials

• Daniel Gascoigne – Department of Health and Social Care (DHSC)
• Nimisha De Souza – DHSC
• Amy Redhead – DHSC
• Dr Heather Payne – Senior Medical Officer for Maternal and Child Health, Welsh Government
• Peter Jones – Welsh Government
• Helen Tutt – Welsh Government
• Laura McGlynn – Scottish Government
• Tasmin Sommerfield – National Screening Oversight (NHS Scotland)
• Angela Timoney – Scottish Government
• Dr Carol Beattie – Northern Ireland

1.4 Secretariat

• Prof Anne Mackie – Director of Programmes, UK National Screening Committee (UK NSC)
• John Marshall – UK NSC Evidence Lead
• Dr Cristina Visintin – UK NSC Senior Evidence Review Manager
• Paula Coles – Senior Information Scientist
• Silvia Lombardo – UK NSC Evidence Review Manager
• Rebecca Dliwayo – UK NSC Evidence Review Manager
• Anne Stevenson – National Lead for Screening Feasibility, Evaluation and Development
• Jo Harcombe – National lead, informed choice, professional development and stakeholder engagement
• Mike Harris – Head of UK NSC public and professional engagement, information and knowledge
• Dr David Elliman – Clinical lead for NHS Newborn and Infant Physical Examination Programme and NHS Newborn Blood Spot Screening Programme
• Zeenat Mauthoor – Secretariat Expert Committee and Policy Liaison Manager
• Fabrice Lafronte – UK NSC secretariat support officer

1.5 Apologies from members

• None

1.6 Apologies from observers/ officials

• Gareth Brown – Director of Screening, NHS National Services Scotland
• Roberta James – Programme lead, Scottish Intercollegiate Guidelines Network (SIGN)
• Dr Meng Khaw – Public Health Director, Public Health Wales
• Kate O’Flaherty – Republic of Ireland
• Prof Niall O’Higgins – Chair of the National Screening Advisory Committee, Ireland
• Professor Steve Powis – National Clinical Director for NHS England

2. Welcome and apologies

The chair, Prof Mike Richards, welcomed all to the meeting. A warm welcome was extended to the crown dependencies who were invited to the UK NSC meeting and will attend future meetings as observers.

The chair reminded attendees of the confidential nature of the discussions, presentations and papers for the meeting and that any recommendations made should not be communicated outside the meeting until these had been published on the website.

The meeting was attended by all 12 members and was therefore quorate.

The committee noted apologies from the officials and the observers list. Deputies were in attendance.

A round of introductions did not take place because the meeting was held virtually, but members were asked to introduce themselves before speaking.

3. Call for any new declarations of interests

Members were asked to provide an update on any new declarations of interest which may be relevant to the meeting. Although not pertinent to this meeting, the chair informed the committee that he had been commissioned to carry out a review of screening quality assurance services within NHS England and that this had been added to the register of interests.

Again, not relevant to this meeting, but in upholding transparency, Prof Taylor-Phillips informed the committee of her involvement on various trial management and steering groups that included the AgeX breast screening extension trials and the Peripheral arterial disease, High blood pressure and Aneurysm Screening Trial (PHAST). The secretariat confirmed that both of Prof Taylor-Phillips’s interests had been recorded.

4. Minutes of the last meeting

Minor edits had been shared with the Chair and the secretariat by committee member Prof Hyde on the discussion for targeted lung cancer screening. The revisions suggested were to add clarity when discussing the model and review. They did not alter the discussion or the recommendation. It was agreed that the edits would be accepted.

The committee approved the minutes from the 24 June 2022 meeting as a true and accurate record of the meeting.

Fifteen action points were identified:

• UK NSC secretariat to update the UK NSC’s register of interests’ table – completed

• UK NSC secretariat to share and present CMO recommendation 5 (feasibility) at the November UK NSC meeting – completed and on the agenda

• UK NSC secretariat to seek further comments on documentation relating to recommendations 6a and 6b from PPV member – completed and on the agenda

• UK NSC secretariat to publish a summary report of adoption of CMOs’ recommendations alongside the publication of the papers – completed

• Numbering of the March minutes to be addressed – completed

• Update on the report for international consensus on informed choice to be presented at the November meeting – on the agenda

• Stakeholder work following cytomegalovirus (CMV) consultation to be provided at the November meeting – no further work was required

• An interim formal report on non-invasive prenatal testing (NIPT) to be added to the UK NSC March 2023 agenda – in hand

• An interim formal report on severe combined immunodeficiency (SCID) to be added to the UK NSC March 2023 agenda – in hand

• John Marshall (JM) to speak to modellers to update the tyrosinaemia type 1 (TYR1) cost effectiveness model – completed and on the agenda

• UK NSC members to send any suggested modifications to the TYR1 cost effectiveness model to Zeenat Mauthoor (ZM) by 12 July. ZM to then share with modellers – completed and on the agenda

• Updated TYR1 model to be shared with FMCH and UK NSC for further consideration – completed and on the agenda

• FMCH to explore and propose feasibility considerations for TYR1 screening, with assistance from the secretariat – on the agenda

• UK NSC to look into agreeing cost effectiveness thresholds and guidance as part of wider work to develop the new committee processes – to be actioned

• A lung task group to be established, reporting to the ARG, that will consider the details of screening people aged 55 to 74 identified as being at high risk of lung cancer. It will further iterate the model to allow optimisation of the pathway and facilitate discussions across the UK NHS’s to assist with understanding resourcing and assist with UK-wide planning – ongoing

5. UK NSC expanded remit and adoption of CMOs recommendations

Following the 2019 review of adult screening programmes in England, the English Chief Medical Officer (CMO) convened a task group to examine the findings of the report. The group developed a set of recommendations for the expanded remit of the UK NSC which were agreed by the 4 CMOs and presented to the UK NSC at its June 2022 meeting. Most of the recommendations have since been agreed and adopted by the committee and had led to the UK NSC publishing a collection of processes, principles and guidance for reviewing evidence related to population, targeted and risk stratified screening.

Further work was requested on 3 recommendations. The committee was informed that work was ongoing on recommendation 4a (to establish closer working relationship with NICE and SIGN) and this would be presented at the next UK NSC meeting.

Committee members reviewed the confidential paper on recommendation 5 regarding feasibility and were asked to share comments with the secretariat within 2 weeks. This paper will be brought back to the committee to approve, noting that future iterations can be signed off electronically.

The committee also reviewed the circulated paper on recommendation 6b. The committee agreed that this recommendation related to internal matters on how the secretariat can best support its patient and public voice (PPV) representatives. As a first step, the secretariat had developed a document on the role of the PPV member that clarifies what PPVs do and how they support the UK NSC in its wider work. The committee was also informed of other work being undertaken to support PPVs. This work will be reported back to the UK NSC to keep members informed. The UK NSC approved the document on the role of the PPV and agreed that this recommendation should be marked as fulfilled, noting that this is an ongoing task on which it will be updated.

Action 1: Secretariat to add Recommendation 4 on NICE / SIGN to the UK NSC’s March 2023 agenda.

Action 2: UK NSC to send comments on the feasibility paper of CMOs’ recommendations to the UK NSC secretariat by 1 December, 2022.

Action 3: Paper on feasibility addressing CMOs’ recommendation 5 to be brought to the UK NSC at its March 2023 meeting.

Action 4: Paper on the role of PPVs approved for publication and recommendation to be marked as completed.

6. Matters arising – Director’s update

6.1 In-service evaluations update: Non-invasive prenatal testing (NIPT)

Prof Mackie provided a verbal update confirming that all is progressing well with the England roll-out. A formal report on the English programme is to be presented at the March 2023 meeting. The UK NSC was informed that a confidential presentation was delivered at the May FMCH meeting which included an update from Wales on its roll-out of NIPT.

Action 5: An interim formal report on NIPT to be added to the UK NSC March 2023 agenda

6.2 In-service evaluations update: Severe combined immunodeficiency (SCID)

A verbal update was provided to the committee. It was agreed that a formal report should be presented at the March 2023 meeting. A confidential update was shared with the FMCH group in May as outlined in the circulated and confidential paper.

Action 6: An interim formal report on SCID to be added to the UK NSC March 2023 agenda

6.3 Cervical screening intervals change

DHSC continues to work closely with NHS E on developing an implementation and communication plan that considers a variety of issues, including around essential IT infrastructure. A feasible and practical plan will then be presented to ministers to facilitate a decision on the extension of screening intervals in the NHS Cervical Screening Programme.

6.4 Update on UK NSC recommendation on a targeted lung cancer screening programme

In June, the UK NSC made a positive recommendation to introduce a targeted lung cancer screening programme for people aged 55 to 74 identified as being at high risk of lung cancer. In England, the policy development working group has been set up with NHS E to work through the feasibility and implementation plans to advise ministers further. Further updates will be reported back to the ARG.

6.5 UK NSC website and blog analytics

Mike Harris (MH), head of UK NSC public and professional engagement, information and knowledge, presented this item to the committee accompanied with slides.

The UK NSC’s online presence has 3 elements: the GOV.UK web pages, the UK NSC recommendations pages and the UK NSC blog.

The committee was informed of a significant increase in views of the toxoplasmosis recommendation page even though this topic had not been looked at by the UK NSC this year. On further examination, most of the nearly 2,000 page views originated from France, mainly the Paris region. The reason is unclear but is a good illustration of the UK NSC’s international reach as well as how the secretariat can use analytics to look at international interest in its work.

It was also reported that the number of blog subscribers had been steadily increasing and the committee is looking to continue to blog regularly on various UK NSC workstreams to maintain interest.

6.6 Stakeholder activity update

Jo Harcombe (JH), national lead for informed choice, professional development and stakeholder engagement, presented this item to the committee summarising key pieces of stakeholder work that are in progress. These included the UK NSC’s annual call which opened on 5 September and will close on 5 December. Other stakeholder engagement work includes support for the UK NSC blood spot task group, ongoing engagement with spinal muscular atrophy (SMA) stakeholders and work on informed choice (item 6.7 below).

The committee thanked MH and JH for their presentations and said it would welcome regular updates on the UK NSC’s online activity and stakeholder engagement work.

6.7 Report on International consensus on informed choice

For the benefit of new members on the committee, JH provided a verbal update on this item that had been previously presented at the March UK NSC meeting under its prior membership. The confidential report had been shared and an update on work was agreed to be brought back to the UK NSC once completed.

Action 7: Report on international consensus on informed choice to be brought to a future UK NSC meeting once work has been completed.

7. FMCH group minutes

FMCH Chair and UK NSC member Dr Sharon Hillier presented a summary report following the FMCH group meeting on 15 September 2022. The UK NSC noted that:

• work on SMA was due to commence shortly
• the group had reviewed the post consultation comments and documents for autism and iron deficiency anaemia and these were tabled for recommendations at this meeting
• the group had also reviewed the further modelling work on TYR1 to be discussed later in the meeting

Post meeting note:

• A blog article was published announcing the start of the UK NSC’s review on screening for SMA.

8. Screening for tyrosinaemia in newborns (evidence summary)

JM presented this item. He provided an update on the committee’s request to undertake additional modelling work to extend the discussion on the model’s estimated incremental cost effectiveness ratio (ICER) of £61,756 for newborn screening for tyrosinaemia type 1 (TYR1).

Detailed information is provided in the coversheet and should be read in conjunction with the modelling report from the June meeting. Background information on the condition alongside additional work undertaken and evidence gathered to date can be read in the June minutes and published documents.

The additional modelling work consisted of additional analyses which explored the impact on the ICER from reducing the cost of the test, reducing the cost of the drug and reducing the discount rate (used in health economics to estimate the value of an intervention over time) for benefits. In isolation, none of these strategies were markedly different from others already undertaken in the original model in terms of impact on the ICER. The 2 analyses that did significantly impact on the ICER were those in which the rate of liver transplantation in clinically presenting cases was reduced.

The reference point for these analyses was a registry study reported in a paper by Spiekerkoetter et al. This paper had been brought to the committee’s attention by stakeholders through the public consultation. The scenario analyses illustrated that if screening is introduced it would detect 3 new cases earlier (modelling scenario suggests that a total of 7 cases to be detected by screening, 4 via current practice) in the first few weeks of life. These babies would be offered the drug nitisinone for life, avoiding liver disease and liver transplantation. In contrast, if screening was not offered, the 3 cases would not be identified until a later age, at around 6 months following severe health deterioration. This would then require the babies to have both nitisinone for a short period of time but also liver transplantation. When the reduced rates were applied, the ICER estimates approximated £20,000. These analyses therefore provided an indication that newborn screening for TYR1 could be cost effective if this was applied as a willingness to pay threshold and highlighted the importance of the transplantation rate in clinically presenting cases on the model outcomes.

However, there was uncertainty about the modelled results because they were generated by discrete scenario analyses that had not been considered for incorporation into the original model. As such, the effect on the base case could not be established. Similarly, any effect on the probabilistic sensitivity analysis could not explored. To do this would require significant modelling work which was not achievable in the timeframe due to the need to report back to the UK NSC’s November meeting.

The update was shared with FMCH and the group agreed that screening for TYR1 should be recommended as the modelling suggested that screening would do more good than harm. It was recognised that, although the model estimated that there would be no reduction in mortality, it estimated that screening would lead to clinical gains through the avoidance of liver disease in the first few months of life and the avoidance of liver transplantation. The FMCH noted that the model estimated that an increased clinical gain, in terms of preventing more liver transplants, resulted in higher ICERs (reduced cost effectiveness). However, from a clinical perspective it was agreed that the avoidance of liver transplantation was a very important outcome. This was because of the magnitude of the procedure, the need for long term monitoring and medication and the risks involved in this.

In discussion, this was accepted by the UK NSC and it was noted that decision making on interventions which involve the use of expensive, but long established, therapies often involves compromise on the application of willingness to pay thresholds. It was further noted that it was reasonable to place greater attention on the transplantation rates used in the new analyses than on those used in the original model. This was because they were based on a more substantial study with a larger sample size reporting outcomes up to 15 years. The committee returned to its concern, raised at the June meeting, that if a higher threshold was accepted for this condition there could be an unreasonable opportunity cost associated with screening which could set a precedent. It was noted that the opportunity cost associated with newborn screening for TYR1 would be relatively minor in the context of healthcare expenditure as a whole. However, if this was replicated across a large number of comparable conditions the opportunity cost could be significant. The committee affirmed its commitment to develop guidance for decision making on cost effectiveness.

The UK NSC acknowledged that a considerable amount of work had been undertaken to examine the evidence and support decision making on whether screening for TYR1 should be recommended. Members were supportive of screening but acknowledged that there is always uncertainty with modelling and in making the recommendation it was important that data on key outcomes should be carefully collected and monitored.

The committee unanimously supported the recommendation to introduce newborn screening for TYR1. The decision was based on evidence presented, comments received and the ethical principles of improving health and using public resources fairly and proportionally given the small number of cases.

In keeping with the proposal presented in the coversheet the UK NSC recommended that:

• work should be undertaken to scope the requirements to implement this recommendation, for example to define the case definition for screening, potentially to align with European practice, to identify and validate laboratory methods, specify resource requirements and develop pathways, standards and the relevant information for the public and professionals
• a mechanism to collect and report on key clinical outcomes should be identified to try to establish the effect of screening over time. This might be considered in relation to the hypothesis presented by the modelling exercise by, for example, including a focus on liver transplantation and learning difficulties
• work to consider the UK NSC’s approach to cost effectiveness would be helpful for decision making in future evaluations and this should include the place of opportunity cost in the decision-making process
• consideration of the methodological and resourcing issues affecting modelling in rare diseases could help improve the quality and efficiency of future evaluations in this area

Action 8: UK NSC to develop a supportive clear, concise plain English document explaining the screening offer, who will benefit and the ethical principles behind the decision.

9. Screening for autism spectrum disorder in pre-school under the age of 5 years (evidence summary)

Paula Coles presented this item to the UK NSC.

Detailed information is provided in the coversheet and should be read in conjunction with the evidence summary.

Autism spectrum disorder (ASD) is a range of disorders that affects the nervous system and brain. The condition can affect how an individual communicates with others and how they socialise in groups. There is a lot of variation in how people are affected by ASD.

The UK NSC last reviewed the evidence for ASD in 2011 to 2012 and recommended that a population screening programme should not be introduced. This was because:

• there was not currently a test that was good enough for screening in the general population
• it was not known if screening would improve long-term outcomes for children with autism
• there was not an established approach to screening which was acceptable to parents

In 2022, the Exeter Test group carried out an evidence summary, aiming to address the gaps in evidence reviewed in 2011 by addressing the following 3 questions:

1. What is the diagnostic stability of ASD, in children diagnosed aged under 5 years?
2. What is the accuracy of screening questionnaires in children under the age of 5 to identify ASD at various ages?
3. Has the benefit of early intervention in children aged 5 years and younger, detected through screening, been demonstrated?

The evidence summary found that, despite additional evidence having been published, the overall outcome of the evidence summary did not support the introduction of ASD screening. This is because it was uncertain how effective the test was at identifying children who were likely to have ASD and whether treating children with ASD who were identified through screening would improve their outcomes.

Following a 3-month consultation, 10 comments were received from 4 professional organisations or individual professionals, 4 members of the public and 2 charities. Comments from the public consultation were mostly supportive of the UK NSC’s proposed recommendation, recognising there was not enough evidence to recommend screening at this time. When submitting a consultation comment there is an opportunity for commentators to provide alternative suggestions to screening. Several suggestions were put forward as covered in the coversheet. These included offering education and training to families and professionals to help increase awareness of the condition and the overlap of ASD with other conditions. The UK NSC welcomed the suggestions for alternatives to screening and was supportive of calls to increase awareness and training in the educational sector. However, this falls outside the UK NSC’s remit and would not be something the committee could pursue. The committee also stated that on the assessment of the evidence base for the test it was clear there had been new evidence, but the test alone is not adequate. The UK NSC said that the advice to the research community for ASD would be that further research is needed to either look at alternative tools to detect ASD or consider what improvements could be made to strengthen the tool.

The UK NSC expressed its gratitude to stakeholders for their contribution to the consultation process, and especially noted their feedback on the importance of early identification, and subsequent appropriate, tailored interventions for affected children. The committee requested that the language used in the coversheet and responses be reviewed.

The UK NSC agreed that screening for autism spectrum disorder in pre-school children under the age of 5 years should not be recommended.

The UK NSC agreed that it would be prudent to archive the ASD recommendation given the number of reviews that had been undertaken and the fact that it was unlikely screening would be introduced in the near future. Archiving would mean that the UK NSC would remove this topic from its list of regular reviews. However, a proposal to consider ASD could be submitted at a future point for the committee to consider via the UK NSC’s annual call for topics.

The committee agreed that the proposal to archive ASD should be shared with the FMCH group before actioning.

Action 9: Secretariat to review responses on the coversheet for ASD and to share this with the FMCH group alongside the suggestion to archive ASD.

Action 10: ASD to be archived if the FMCH group agrees with the proposal

Post meeting note: The UK NSC secretariat shared the document and UK NSC’s suggestion that this topic should be archived with the FMCH group. The FMCH group supported the decision to archive ASD.

10. Screening for the prevention and prediction of pre-eclampsia

Dr Cristina Visintin presented this item to the UK NSC.

Detailed information is provided in the coversheet and should be read in conjunction with the evidence summary.

Pre-eclampsia (PE) is a condition that can affect some women, usually during the second half of pregnancy (from 20 weeks), during labour or the first few days after birth. It is currently unclear what causes this condition. Symptoms of PE are high blood pressure (hypertension) and too much protein in the urine (proteinuria). Left untreated, PE can cause serious, even fatal, complications for both mother and baby. In the UK, the 2019 NICE definition of PE is used. There are also sub-classifications of this condition. If PE requires that the baby should be born before a pregnancy reaches 37 weeks this is called preterm PE. This is commonly considered a more severe form of the condition because the birth has to be induced to prevent possible harm to both the mother and baby. If birth is after 37 weeks then this is referred to as term PE.

In the UK, screening for PE is not recommended as a population screening programme. The current management of PE focuses on general monitoring, controlling of maternal hypertension and, where appropriate, the birth of the baby in line with NICE guidance. The UK NSC’s position on PE is similar to that held by many internationally regarded countries whose preferred and recommended approach is to identify ‘high risk’ women and administer prophylactic treatment, such as low-dose aspirin. This is because there is not enough evidence of clinical and/or cost benefit to offer a population screening programme for PE. It is recognised, however, that in the United States there is a whole population recommendation to screen for PE in the form of blood pressure measurements at each prenatal visit. This recommendation was recently updated in 2021.

The UK NSC last reviewed screening for PE in 2011 and recommended that a population screening programme should not be introduced. This was because:

• there was no test that could accurately predict if a woman will experience PE
• there was a lack of preventative treatment
• more research was needed to understand the underlying causes of PE

At the time of the recommendation, the UK NSC did signpost to the clinical practice guidelines covered by NICE even though screening was not recommended.

The UK NSC’s 2022 evidence summary undertaken by Costello Medical looked at 2 key questions:

1. What is the most effective screening test to predict PE? (criterion 4)
2. Is there an effective intervention for preventing PE in screen-detected women? (criterion 9)

The evidence was split into 3 categories: preterm PE, term PE and all PE. The category with the largest volume of high-quality evidence was preterm PE. It indicated that a suitable screening test could be used based on a combination of measuring some maternal factors such as mean arterial pressure (MAP), uterine artery pulsatility index (UtA-PI) and placental growth factor (PlGF)/ pregnancy-associated plasma protein A (PAPP-A). In terms of intervention for preventing preterm PE, there was a low volume of high-quality evidence that a daily dosage of 150 mg aspirin up to 36 weeks of gestation may prevent the incidence of preterm PE in screen-detected at-risk women and may shorten the length of neonatal intensive care unit (NICU) stay for babies. From the studies identified it is suggested that the intervention is well tolerated with no safety concerns raised. No intervention for term PE or all PE was identified for population use.

The UK NSC held a 3-month public consultation and invited stakeholders to comment on the consultation document as well as to suggest what the UK NSC should do to collect the evidence needed to support a positive screening recommendation for preterm PE. Two comments were received that supported the findings of the evidence summary and provided a steer on the next steps the secretariat could explore on further work to consider offering preterm PE as a screening programme. The FMCH chair confirmed to the committee that the document was shared with the group in May and that it was supportive of preterm PE being a potential screening candidate while highlighting the need for further work to explore this as a screening programme. FMCH suggested that the secretariat should explore this and instruct the RMG to discuss this further.

The secretariat suggested that more evidence is needed to fully understand the harms and benefits of a screening programme to prevent preterm PE. An option, for example, is more primary research into the effectiveness and acceptability of such a screening programme or (or in addition) if the UK NSC could consider commissioning a model to explore the effectiveness of the new screening strategy and establish the opportunity cost of the screening programme. The committee was informed by Prof Hyde that opting for the model option to address areas of uncertainty would also allow the committee to undertake a value of information analysis. The committee emphasised that it was not advocating for new primary research that the ASPRE trial (Combined Multimarker Screening and Randomized Patient Treatment with Aspirin for Evidence-Based Preeclampsia Prevention) had since published but that it was looking for research that focussed on the effectiveness of such a strategy.

The committee noted the low response rate to this topic from members of the public and stakeholders and expressed its disappointment as the committee had thought more clinical stakeholders may have welcomed the chance to engage. The committee agreed that, based on the evidence and comments made through the consultation, it supported the proposal for more work to be commissioned to explore preterm PE further as this looked like a possible screening candidate. The committee suggested that as a first step it would be valuable to engage with some stakeholders to try to identify what type of further work should be pursued and for this to then be shared with FMCH and RMG for a proposal to be developed.

In the meantime, the UK NSC recommended that a population screening programme for pre-eclampsia should not be introduced. However, it noted that preterm PE looked like a suitable candidate and further work to assess this would be undertaken.

A final comment was made by a UK NSC member asking for clarification and for an amendment to be made to the draft document. Dr Cristina Visintin (CV) would ensure that the suggestions made were taken into account in the final version of the evidence summary before publication.

Action 11: Prof Taylor-Phillips to share comments with CV.

Post meeting note: a third consultation comment had been submitted but due to a technical glitch this was not presented at the UK NSC meeting. The comment was reviewed and shared with the secretariat, the FMCH and UK NSC chair, who noted that it supported screening for preterm PE and therefore agreed that it did not alter the discussion held at the meeting nor the recommendation made.

11. Screening for iron deficiency in children

Dr Visintin presented this item to the UK NSC.

Detailed information is provided in the coversheet and should be read in conjunction with the evidence map.

Anaemia is a condition that occurs when there is a lack of red blood cells in the body. There are several types of anaemia and the most common is known as iron deficiency anaemia (IDA). This is where the body lacks enough iron to keep the red blood cells functioning properly. In children, it is usually due to eating a diet that has too little iron in it.

The UK NSC last reviewed screening for IDA in 2017 and recommended that a population screening programme should not be introduced. This was because:

• the estimated prevalence of iron deficiency (ID)/IDA in UK in children under the age of 5 years old was variable
• no studies were identified assessing whether ID/ IDA in this population was associated with later adverse health and developmental outcomes
• no studies were identified assessing a screening test for ID/IDA (invasive, non-invasive or minimally invasive) against a diagnostic reference standard)

In 2022, Costello Medical carried out an evidence map as part of the UK NSC’s review cycle. The evidence map looked at 3 key questions:

1. What are the adverse developmental outcomes of ID/IDA in children aged under 5 years?
2. Is there a non-invasive, simple, safe, precise and validated screening test for ID/IDA in children aged under 5 years?
3. What is the effect of iron supplementation on developmental complications of ID/IDA in asymptomatic children identified early through screening?

For each question, evidence was considered relevant if it provided data that answering the questions with regards to ID, IDA or both.

Overall, the evidence map concluded that there is insufficient evidence to justify commissioning an evidence summary, and the current UK NSC recommendation should not be changed.

Following a 3-month consultation, 4 responses were received with 3 professional organisations supporting the evidence map’s conclusions. The other consultation comment, from a member of the public, supported the introduction of a screening programme for IDA in children. This stakeholder also emphasised the importance of training healthcare personnel to recognise the signs and symptoms of IDA in children so that prompt intervention can be provided.

The findings of the IDA in children evidence map were presented to the FMCH group. The FMCH group had no comments and agreed that the evidence was limited and insufficient to support further work. The UK NSC’s vice chair and members noted the comments received during the consultation and, in particular, expressed their appreciation for the personal account shared with the committee. The UK NSC agreed that the response to the personal account should be addressed in the coversheet and the committee agreed that better support and awareness should be made available for this condition, though this is outside the committee’s remit to do.

Based on the overall evidence synthesis and comments received, the UK NSC made no further comments and recommended that a population screening programme for IDA in children should not be introduced.

The committee suggested that this topic should also be archived. If FMCH supported this proposal, IDA in children would be removed from the UK NSC’s list of conditions that are regularly reviewed and archived. However, a proposal to look again at IDA in children could be submitted at a later point via a submission at the UK NSC’s annual call.

Action 12: CV to review the response provided in the IDA in children’s coversheet before publishing.

Action 13: UK NSC Secretariat to share the proposal to archive IDA in children with the FMCH group.

Action 14: UK NSC Secretariat to archive IDA in children with FMCH support.

Post meeting note: The UK NSC secretariat shared the document and UK NSC’s suggestion that this topic should be archived with the FMCH group. The FMCH group supported the decision to archive IDA in children.

12. Screening for HTLV in antenatal period

Paula Coles and John Marshall presented this item to the UK NSC.

Detailed information is provided in the coversheet and should be read in conjunction with the evidence map.

Human T-lymphotropic virus type 1 (HTLV1) is a retrovirus (like HIV) which affects the immune system. It is associated with certain leukaemia and lymphoma. Most people have no symptoms. There is currently no cure or vaccine for HTLV.

HTLV can be passed from person to person in various ways; particularly via an infected blood transfusion or through having unprotected sex. HTLV can also be passed from mother to child in pregnancy, during a caesarean birth or through breastfeeding for longer than 6 months. Once acquired, HTLV infection is lifelong. HTLV is endemic in some parts of the world but is rarer in Western Europe. Some countries, such as Japan where HTLV is endemic, recommend universal antenatal screening. Although the screening tests used in Japan are considered to have high sensitivity and specificity, they do generate a substantial number of false positives, particularly in low prevalence areas.

The UK NSC had reviewed this topic 4 times with the last review having been undertaken in 2017. The UK NSC’s recommendation is that a population screening programme for HTLV should not be introduced. This was because:

• there is not enough evidence to say that the benefits of screening outweigh the harms
• it is not known how well the test performs in pregnant women
• it is unlikely that the mother will pass on the virus to her child unless she breastfeeds for more than 6 months
• most infants infected with HTLV do not develop symptoms and the risk of developing a serious illness appears to be low
• there is no treatment for HTLV, and the only approach is the avoidance of breastfeeding particularly after 6 months
• screening may make some women and their families feel anxious, depressed or stigmatised as there is no treatment

In 2022, the evidence team carried out an evidence map for HTLV with a view to archiving this topic. The evidence map focussed on one key question: What is the volume and type of evidence on the benefits/harms of screening for HTLV during pregnancy?

This question was chosen as it was identified as a key uncertainty in the first substantial assessment of antenatal screening for HTLV infection published in 2000. The conclusion of previous review cycles was that the evidence base on this issue had remained static.

The evidence map identified only one prospective cohort study (Itabashi et al. 2021) that met the UK NSC’s inclusion criteria. Although this Japanese study provided some information on the implementation of screening, it did not provide any insight into the balance of benefits and harms arising from maternal diagnosis of HTLV infection. Similarly, a brief UK cost effectiveness analysis did not consider the potential harms.

Following a 3-month consultation, 21 comments were received. Eleven were from members of the public who were either directly or indirectly affected by HTLV. The remaining 10 comments were from professionals or organisations representing healthcare professionals. With only 2 exceptions, the responses were supportive of screening for HTLV. The UK NSC was informed that as the consultation for this topic closed in October it had not been presented to FMCH. Instead, it had been brought straight to the committee for a recommendation. FMCH members had overseen the development of the evidence map for HTLV and were aware of, and were content with, the proposed recommendation.

The UK NSC was informed that in previous review cycles the committee had received only a handful of comments on this topic. A possible reason for the increased interest in this topic may have been as a result of the publication of the World Health Organisation technical document on HTLV.

When reflecting on the comments received during the consultation, the UK NSC was made aware of a range of criticisms on its handling of its reviews of HTLV in several of the comments. The chair stated that the committee’s handling of regular reviews had undergone significant change over the years and had to be proportionate to its resources. Using evidence maps allows the UK NSC to undertake a ‘light touch’ review of a topic to see if further work and resources are justified. It was emphasised that the expanded remit of the UK NSC would lend itself more to using evidence maps to keep up with the need to regularly review conditions while also exploring new and emerging matters in screening. Although the committee appreciated this, it considered that further work on the coversheet was needed to adequately respond to the range of comments received on this topic.

In regard to archiving the population screening recommendation, the committee considered that a view from the FMCH was necessary before this approach was formally approved, given the number of comments and increase in interest in the topic. The committee considered the suggestion from stakeholders that HTLV should be considered as a candidate condition for a targeted screening programme. It was noted that the chair had written to one of the stakeholder organisations suggesting that they submit a proposal for this through the annual call for topics. In relation to the proposal, from stakeholders, that the UK NSC should undertake a cost effectiveness evaluation it was agreed that this could be considered as part of the annual call for topics evaluation group discussion.

Action 15: Secretariat to work on the coversheet and share the HTLV post consultation papers with FMCH to consider whether the group supports the proposal to archive this topic.

Action 16: If FMCH supports the UK NSC’s decision on HTLV, this topic should be archived.

Post meeting note: The UK NSC secretariat shared the document and UK NSC’s suggestion that this topic should be archived with the FMCH group. The FMCH group supported the decision to archive population screening for HTLV.

13. Adult Reference Group (ARG) minutes

ARG Chair and UK NSC member, Dr Ros Given Wilson, presented a summary report of the developments following the ARG meeting on 29 September 2022. The update included a discussion of the UK NSC’s recommendation on a targeted lung cancer screening programme, the creation of the RMG (tabled for discussion at this meeting) and other confidential matters.

14. Any other business

No items were raised

15. Next meeting

Friday, 10 March 2023