Transparency data

UK NSC minutes March 2022

Updated 22 June 2022

These minutes are final.

The meeting was held online from 9:30am to 2pm on 7 March 2022.

1. Attendees

1.1 Members

• Professor Bob Steele – Chair
• Claire Bailey – Lead Clinical Nurse Specialist in breast screening, SW London
• Prof Roger Brownsword – School of Law, King’s College London (KCL)
• Eleanor Cozens – patient and public voice (PPV)
• Prof Stephen Duffy – Director of the Policy Research Unit in Cancer Awareness, Screening and Early Diagnosis and Prof of Cancer Screening, Centre for Cancer Prevention, Wolfson Institute of Preventive Medicine
• Prof Gareth Evans – Consultant in Genetics Medicine, St Mary’s Hospital, Manchester
• Jane Fisher – PPV
• Hilary Goodman – Midwife, Hampshire Hospitals NHS Foundation
• Prof Alastair Gray – Director at the Health Economics Research Centre, Nuffield Department of Population Health and Prof of Health Economics at the University of Oxford
• Prof Chris Hyde – Public Health Specialist, University of Exeter
• Dr Jim McMorran – GP, Coventry
• Margaret Ann Powell – PPV
• Dr Anne-Marie Slowther – Reader in Clinical Ethics, Warwick Medical School, University of Warwick
• Dr Graham Shortland – Consultant Paediatrician, Cardiff and Vale University Health Board, Noah’s Ark Children’s Hospital for Wales (Vice-Chair)

1.2 Observers

• Daniel Gascoigne – Department of Health and Social Care (DHSC)
• Nimisha De Souza – DHSC
• Dr Heather Payne – Senior Medical Officer for Maternal and Child Health, Welsh Government
• Laura McGlynn – Scottish Government
• Michael Kerr – Scottish Government
• Tasmin Sommerfield – National Screening Oversight (NHS Scotland)
• Dr Carol Beattie – Northern Ireland
• Prof Niall O’Higgins – Chair of the National Screening Advisory Committee, Ireland
• Evette Wade – Republic of Ireland
• Kate O’Flaherty – Republic of Ireland
• Deborah Tomalin – Director of Public Health Commissioning and Operations, NHS England and NHS Improvement (NHSEI)

1.3 Invitees

• Dr David Elliman – Clinical lead for NHS Newborn and Infant Physical Examination Programme and NHS Newborn Blood Spot Screening Programme
• Dr Ros Given-Wilson – Chair of the UK NSC Adult Reference Group (ARG)
• Nick Hicks – National Co-ordinating Centre for HTA
• Dr Sharon Hillier – Chair of the UK NSC Fetal Maternal and Child Health (FMCH) Group
• Gila Sacks – Director Prevention Services, Office for Health Improvement and Disparities (OHID), DHSC

1.4 Presenters

• Siobhan Alt – Project Lead, Fetal Anomaly Screening Programme, NHSEI
• Nadia Permalloo – Head of Quality Assurance Development, Screening Quality Assurance Service NHS England and NHS Improvement (NHSEI)
• Andrew Rostron – Project Lead, NHSEI
• Dr Lena Alkhudairy – University of Warwick
• Prof Aileen Clarke – University of Warwick

1.5 Secretariat

• Prof Anne Mackie – Director of Programmes, UK NSC
• John Marshall – UK NSC Evidence Lead
• Dr Farah Seedat – UK NSC Evidence Review Manager
• Dr Cristina Visintin – UK NSC Evidence Review Manager
• Silvia Lombardo – UK NSC Evidence Review Manager
• Julia Bowen – UK NSC Evidence Review Manager
• Zeenat Mauthoor – Secretariat Expert Committee and Policy Liaison Manager
• Paula Coles – Senior Information Scientist
• Fabrice Lafronte– UK NSC Secretariat officer
• Jo Harcombe – OHID Screening national lead for informed choice, information and workforce

1.6 Apologies from members

• Prof Louise Bryant – Associate Prof in Medical Psychology, University of Leeds

2. Welcome and introductions

The chair, Prof Steele, welcomed all to the meeting.

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

Members were asked to provide an update on any new declarations of interest which may be relevant to this meeting. No new declarations were made.

Apologies were noted from 1 member. The chair confirmed that the meeting was quorate with 14 members in attendance.

Before a call to order was made the chair updated the meeting on ongoing developments related to the committee. Following the 2019 review into adult screening, the English chief medical officer (CMO) convened a task group to review the report. This group developed a set of recommendations, which were accepted by the 4 CMOs.

At the direction of the 4 CMOs, it was agreed that the UK NSC should conduct an open recruitment process for the chair of the UK NSC to mark its expanded remit to actively consider proposals for targeted and risk stratified screening as well as population screening.

Prof Steele said he expected this to be his last UK NSC meeting and expressed his gratitude at having been chair of the UK NSC for over 6 years. He thanked all members for their support and dedication to the UK NSC and wished the committee well in its new chapter.

3. Minutes of the last meeting

The committee approved the minutes from the 4 November 2021 meeting as a true and accurate record of the meeting. Two amendments were requested:

• for NHS England and Improvement (NHSEI) attendees to be noted as observers at the UK NSC meeting rather than invitees
• under item 4.1 UK NSC secretariat host: for the reference to be ‘English CMO’ instead of ‘CMO’.

Three action points were identified from the November meeting. All actions were completed. Actions were for:

• A valedictory letter to be issued to Dr Paul Cross for his service to the committee – completed

• UK NSC secretariat to contact the National Institute for Health and Care Excellence (NICE) and share comments received from the consultation on alcohol misuse for further discussion – completed

• UK NSC secretariat to add alcohol misuse to its internal list of potential targeted screening candidates – completed

4. Matters arising – director’s update

4.1 In-service evaluations update: Non-invasive prenatal testing (NIPT) and severe combined immunodeficiency (SCID)

NIPT

Nadia Permalloo, Head of Quality Assurance Development (clinical) at NHSEI, presented the UK NSC with a confidential progress report on the national evaluative offer of NIPT that went live on 1 June in England.

A second report will be shared with the UK NSC in due course.

SCID

Prof Mackie gave the committee a confidential update on progress so far on the in-service evaluation of SCID that went live from 6 September 2021.

The UK NSC will receive an update on this again in due course.

4.2 Lung cancer work update: evidence review and modelling work

John Marshall presented this update on the review of evidence into lung cancer screening.

The committee had received the lung cancer screening rapid review and interim cost effectiveness report from Exeter University during the pre-consultation phase. Both documents were very positive about the case for targeted lung screening in adults with a history of smoking and the cost-effectiveness estimate was very favourable. However, the paper explained that the model supporting the estimate was incomplete. Pre-consultation comments had raised some concerns related to this and these were being reviewed by the Exeter team.

Time pressure for a committee recommendation was noted and the use of the interim report alongside the rapid review was broadly accepted for consultation purposes. It was expected that the public consultation would open on 11 March 2022 for 3 months, closing on 8 June. The consultation closing date follows the ARG meeting scheduled for 19 May 2022, so it was agreed a small group would convene to review comments before the submission of the lung screening documentation to the June UK NSC meeting for the committee to make a recommendation under its expanded remit.

It was highlighted that the timescale for completing the Exeter model was uncertain, and it would be preferable to have a completed model by the June meeting. A model had been developed by a commercial company based in the Netherlands, which is affiliated with the NELSON Study Group, with input from clinicians associated with the NHS Targeted Lung Health Check (TLHC) Programme. This model differs substantially from the Exeter model, although the cost effectiveness estimates for comparable strategies were similar. The evidence team has been working with Sheffield University to conduct a quality assurance appraisal of the model as a supplementary exercise in case the Exeter model is not completed by the June UK NSC meeting.

Post meeting: The public consultation opened as planned on 11 March 2022 and closed on 8 June. This item and comments received will be discussed further at the June UK NSC meeting.

Action 1: Secretariat to set up a meeting to discuss lung cancer consultation comments ahead of the UK NSC June meeting.

4.3 Cervical HPV interval change

Prof Mackie presented this item.

In 2019, the UK NSC made a recommendation to extend the cervical screening intervals from 3 to 5 years. Scotland and Wales have both since implemented this change, Scotland in March 2020 and Wales in January 2022. The implementation of the change in Wales led to significant media coverage and a petition of more than 100,000 signatures opposing it. In England, ministers have asked the DHSC to work closely with NHSEI to agree an implementation and communication plan that takes into account a variety of considerations, including concerns around the IT infrastructure’s ability to accommodate changes before a decision is made. NHSEI confirmed that planning work is well under way looking at supporting the extension of screening intervals if this is approved.

The UK NSC’s recommendation to extend screening intervals was based on the findings of modelling work that was publicly consulted on. Stakeholders supported this change during the consultation process, due to the improved accuracy of the new HPV primary screening test. Since the Welsh announcement, numerous UK-wide charities, including Cancer Research UK (CRUK) and Jo’s Trust, have sought to reassure women that the transition to 5-yearly intervals with HPV offers the same level of protection as 3-yearly cytology tests. The UK NSC secretariat is looking to set up a meeting with the devolved governments and their NHS leads to identify areas of learning when a recommendation is made into policy and how the UK NSC can best support the devolved governments when making such announcements.

Post meeting note: A confidential meeting took place in April between the secretariat and the devolved governments along with their NHS leads to discuss the Welsh experience of implementing the UK NSC recommendation to extend HPV screening interval to 5 years.

Prof Mackie also informed the committee of the self-sampling validation work under way in England. The HPValidate study involves women being invited to take a self-test when attending their GP practice for cervical screening or when referred to colposcopy. The study aims to collect around 5,000 samples from general practice and 1,750 from colposcopy clinics. It will investigate the effectiveness of self-sampling by comparing self-taken samples with samples taken by a doctor or a nurse. It is expected this study will complete by the end of 2022 and the UK NSC will review the findings when ready. In the meantime, the UK NSC is also in talks with the Health Technology Assessment (HTA) programmes, academics and the NHS about the possibility of offering self-sampling as a primary screen test and what this requires logistically.

4.4 UK NSC development of structural changes to support the new direction of the committee

Prof Mackie provided the committee with a confidential verbal update on the structural changes required for the committee to fulfil its expanded remit under a newly appointed chair.

4.5 Establishment of workstreams to implement CMOs’ recommendations

Prof Mackie and John Marshall provided the committee with a confidential verbal update on the progression of the CMOs’ recommendations for a single new advisory body to consider population, targeted and risk stratified screening).

5. UK NSC evidence map step – formal sign-off

John Marshall presented a proposal to use evidence maps as the first step in the process for regular topic updates where the existing recommendation is not to offer screening.

The UK NSC has been piloting the use of evidence maps for a range of regular topic updates. The committee’s approval was sought to formally establish this approach for all such updates within the evidence review process.

Evidence maps are a way of scanning published literature to look at the volume and type of evidence in relation to a specific topic. They help determine if there is enough evidence to justify commissioning more work on the topic under consideration.

John outlined the 5 main input points to the evidence review process:

• regular updates where an existing recommendation is not to offer screening
• regular updates where a recommendation is to offer screening
• suggestions for new screening programmes made through the annual call for topics
• programme modification requests
• early update requests

Evidence maps are used as the first step in every input point except where there is an existing recommendation not to offer screening. In these cases the primary step for reviewing the topic is to commission an evidence summary. This is a much more thorough and time-consuming process than an evidence map that gives an analysis of the direction of the evidence.

At previous UK NSC meetings it was agreed that evidence maps could be used in the 3-yearly update process on a case-by-case basis, with a view to using them permanently as the first step in the evidence review process for all topics at a later date. The rationale for this is that repeat reviews at 3-yearly intervals has resulted in a decreasing volume of evidence for some topics, making evidence summaries more difficult to justify in terms of the information to be gained. The workload within the evidence team has been increasing, making it important to focus more clearly on priority topics. The use of evidence maps across all 5 input points would result in a more consistent approach.

In discussion, it was noted that evidence maps did not provide much scope for stakeholder engagement. However, the committee considered that other opportunities for engagement would be available as the evidence review process is developed to better reflect the UK NSC’s expanded remit. The committee approved the proposal to incorporate evidence maps as a formal consistent first step as part of the evidence review process.

Action 2: Secretariat to include evidence maps as a first step in the evidence review process

6. UK NSC Annual Call (2021)

Paula Coles presented this item. The annual call for topics 2021 closed on 6 December 2021. Four submissions were received on screening for conditions during the neonatal period. UK NSC input was sought on the third submission (metachromatic leukodystrophy). Decisions on next steps for the 3 remaining submissions were made by the evaluation group in January and supported by the FMCH group.

The proposals received were as follows:

6.1 Neonatal diabetes

It was agreed this proposal would benefit from further consideration and that an evidence map should be commissioned to look at whether there are any national or international screening guidelines and to look at prevalence/incidence in the UK, natural history, potential screening tests, including genetic versus biochemical screening, and treatment.

6.2 Anorectal malformations

It was agreed this proposal would benefit from consideration following discussions that centred around what the screening test might be, which malformations were proposed, and whether they could be detected by the fetal anomaly scan.

It was agreed that an evidence map should be commissioned, with a focus on whether there is a suitable screening test.

6.3 Metachromatic leukodystrophy (MLD)

The evaluation group and FMCH group agreed no further action should be taken until NICE had made its decision on the treatment drug for MLD.

Since the reference group meeting, NICE had reversed its initial decision and now recommends the use of a new medicine called Libmeldy in children with late infantile or early juvenile forms (with no clinical signs or symptoms) and children who have the early juvenile type (with early clinical signs or symptoms, and who can still walk independently and have no cognitive decline).

The committee agreed that an evidence map focusing on the test and treatment should be commissioned.

6.4 Craniosynostosis

The evaluation group felt this proposal did not provide much information and the potential for parental anxiety was high. There were also concerns regarding case definition. Following discussion at FMCH, Peter McEwan (FMCH member and a neonatologist) informed FMCH that he would seek clarification on the proposal and then feed back.

Following the meeting, Peter McEwan had been in touch with the submitter, and this topic will be taken back to FMCH for further discussions before a decision is made on next steps.

Action 3: The UK NSC to commission 3 evidence maps on neonatal diabetes, anorectal malformations and MLD following the 2021 annual call for topics submissions

7. Report on international consensus on informed choice in screening

Dr Lena Alkhudairy and Prof Aileen Clarke, from the University of Warwick, gave a confidential presentation on their work, commissioned by Public Health England (PHE) on international consensus on informed choice in screening.

The aim of the study was to define a set of international principles to apply to the development and provision of evidence-based information for individuals invited for screening.

The presentation stimulated a lot of discussion. The committee was very supportive of the work undertaken so far and in support of the work being shared with international colleagues to be able to agree to a set of principles underpinning informed choice, and to then update the UK NSC’s work on informed choice.

Action 4: Report on international consensus on informed choice to be shared more widely and the UK NSC to be updated accordingly

8. FMCH group report

Dr Sharon Hillier presented a summary report of developments following the FMCH meeting on 20 January 2022.

The UK NSC was informed that public consultations were being held on hypertension in children and tyrosinaemia and would close on 10 May 2022 and 8 March 2022 respectively. Additionally, the draft evidence map on iron deficiency anaemia (IDA) in children and draft evidence summary on autism would soon move to public consultation and pre-consultation respectively.

A newborn blood spot task group is being set up. The group will be chaired by David Elliman, invitations to join the group had been issued and 3 projects were already in development. Work was progressing on work around developmental and behavioural problems and the asymptomatic bacteriuria project aimed at evaluating the feasibility of a cost effectiveness evaluation or primary research.

9. Evidence map – screening for biotinidase deficiency in newborns

Silvia Lombardo presented this item. Detailed information is provided in the coversheet and should be read in conjunction with the evidence map.

Biotinidase deficiency is an autosomal recessive metabolic disorder which affects the BTD gene.

The UK NSC last looked at the evidence to screen for biotinidase deficiency in newborns in 2018. It was recommended at that time that systematic population screening should not be offered because:

• although the prevalence and incidence of biotinidase deficiency had been reported for global populations, UK prevalence could not be determined based on these figures, due to variation in ethnicity and genetic differences

• no studies that evaluated the performance of newborn screening tests were found

• there was insufficient evidence to inform:

  • if screen detection improves outcomes compared with clinical detection
  • which screen-detected children with partial or profound deficiency will develop symptoms and need biotin supplementation, or the optimal dose to give

The 2021 evidence map was undertaken by Costello Medical. The aim of the 2021 evidence map was to address the gaps in the evidence from the 2018 review through 2 questions, one on the prevalence/incidence of the condition in the UK and one on the accuracy of available screening tests using dried blood spots.

The evidence map found there is currently no evidence on the prevalence and/or incidence of biotinidase deficiency in the UK, and the accuracy of available screening tests using dried blood spots to detect biotinidase deficiency had been explored in high-income settings, but no UK-specific evidence was found.

Following a 3-month consultation hosted on the UK NSC website, the public consultation closed on 10 December 2021. Direct emails were sent to 13 stakeholders. The page was viewed 247 times. Consultation comments were received from:

• Royal College of General Practitioners (RCGP)
• Paul Gissen, Professor of Paediatric Metabolic Medicine at UCL Great Ormond Street Institute of Child Health
• Royal College of Paediatrics and Child Health (RCPCH)

The RCGP supported the conclusion of the evidence map and the reaffirmation of the current recommendation not to screen for biotinidase deficiency. The RCPCH noted that early screening would be useful and early intervention soon after birth can prevent or reduce hearing loss, visual difficulties and developmental delay. Another consultation comment highlighted that newborn screening for biotinidase deficiency is available in other countries and that the UK should start screening for this condition too.

Given the absence of evidence from the UK, it was suggested that the UK NSC could look at evidence from other countries, such as the Netherlands, which is currently screening and has a well-organised programme for this condition. It was also proposed that the new blood spot task group could look into this topic, and perhaps consider the suitability of a modelling exercise as part of the next review cycle.

The UK NSC agreed that a systematic population screening for biotinidase deficiency in newborns should not be recommended in the UK at the current time.

10. Evidence map – screening for cytomegalovirus (CMV)

Julia Bowen presented this item. Detailed information is provided in the coversheet and should be read in conjunction with the evidence map report. Cytomegalovirus is a common virus resulting in mild/no symptoms in immunocompetent adults. CMV is one of the most prevalent congenital infections and is the leading non-genetic cause of childhood hearing loss and a significant cause of neurological impairment.

Newborn screening for CMV is currently not recommended because of the 2017 review carried out by Bazian Ltd. The review found that:

• it is not clear how to identify newborns who will develop long-term sequelae
• the treatment offered to babies with asymptomatic congenital CMV (cCMV) infection is unclear
• screening is likely to identify a greater number of infants with cCMV, most of whom are likely to have minimal symptoms or no symptoms and it is unknown whether screening improves their outcomes

Costello Medical undertook the 2021 evidence map. The purpose of the 2021 evidence map was to analyse the volume and type of evidence related to important concerns connected with CMV screening and to determine if a more comprehensive review of CMV screening should be commissioned at this time. The evidence map examined 2 key questions:

1. Are there any markers that can distinguish which newborns with cCMV will suffer long-term negative outcomes such as hearing loss or neurological impairments?
2. Is there evidence that screening for cCMV impacts on morbidity outcomes (for example hearing)?

The findings of the 2021 evidence map found there was no consensus on the predictive value of such markers or their reliability, and that there was insufficient evidence on the advantages of early treatment or intervention.

A 3-month consultation was hosted on the UK NSC website. Direct emails were sent directly to 10 stakeholders. The public consultation closed on 17 January 2022, with 167 consultation comments received.

A combination of 10 stakeholders and experts recommended looking at antenatal screening and targeted screening. Members of the public contributed 157 responses, highlighting a lack of information on the condition, a lack of care pathway and post-diagnosis support, particularly the challenge of interacting with multiple departments, delays in diagnosis in both newborns and pregnant women, and a lack of vaccine research.

Members agreed with the proposed recommendation against introducing a population screening for CMV. There was a lack of understanding about CMV even among medical professionals. It was emphasised that further support should be provided to maternity services and external bodies to improve the support pathway and help staff reduce the risk of passing CMV to babies. Following the public engagement from the consultation it was agreed that the UK NSC would engage with stakeholders around this.

The UK NSC agreed that systematic population screening for cytomegalovirus in newborns should not be recommended in the UK at the current time.

Action 5: The UK NSC to engage with stakeholders following the consultation on CMV.

11. ARG report

Dr Given-Wilson presented a summary report of developments following the ARG meeting on 27 January 2022. An update was also provided on the work from the artificial intelligence (AI) task group and AI in diabetic eye screening (DES) guidance. The evidence maps on enhanced risk-based screening for colorectal cancer and thyroid disease were discussed at the last ARG meeting and had been tabled for discussion at this UK NSC meeting.

The AI task group will remain an ad hoc group and be called upon when the UK NSC encounters any future AI projects.

12. Evidence map – enhanced risk-based screening for colorectal cancer

Cristina Visintin presented this item for information. Detailed information is provided in the coversheet and should be read in conjunction with the evidence map.

Colorectal cancer (CRC) encompasses a heterogenous collection of cancers which start in the colon or rectum. A variety of methods exist to detect CRC, including the guaiac test, immunochemical test of stool, DNA stool test and colonoscopy. Faecal immunochemical testing (FIT) is a newer screening tool, introduced in England in June 2019.

An application was received by the bowel cancer screening research advisory committee (RAC) in 2021 for a proposal on enhanced risk-based screening for bowel cancer. The UK NSC was asked to support the development of a research project aimed at evaluating if the current national screening programme could refine its referral pathway to colonoscopy by applying an enhanced risk assessment. In support of this request the UK NSC evidence team commissioned an evidence map to assess the volume and type of evidence relevant to enhanced risk-based screening exploring whether FIT, combined with risk prediction models, encompassing various CRC risk factors, may perform better in screening for CRC than FIT alone.

A 2016 systematic review by Cooper (published as part of a PhD thesis in 2018) was identified with a similar scope. This work was used as a starting point for the UK NSC evidence map. The question examined by the evidence map was:

Do risk scoring systems, which combine the faecal immunochemical test result for colorectal cancer screening with other risk factors perform better than the current UK screening pathway using the faecal immunochemical test alone?

Overall, the evidence map concluded there was insufficient evidence related to enhanced risk-based screening for CRC to justify an update of the 2016 Cooper systematic review. However, given rapid developments, it was suggested it might be beneficial for the UK NSC to monitor future developments in this field.

The UK NSC agreed with the findings of the evidence map. It was highlighted that the statement on page 6 referring to early detection was misleading due to the lead time bias, it is irrelevant when considering whether the possibility of screening is questioned, and the wording should be amended.

Action 6: The statement on page 6 of the enhanced risk-based screening for colorectal cancer evidence map to be amended due to time bias.

13. Evidence map – screening for thyroid disease in adults

Silvia Lombardo presented this item. Detailed information is provided in the coversheet and should be read in conjunction with the evidence map.

Thyroid disease is a condition in which the thyroid gland does not function properly. There are 2 types of thyroid disease – hyperthyroidism and hypothyroidism – when the body produces too much and too little thyroid hormone respectively. Thyroid dysfunction is associated with other health problems which include increased risk of heart disease, decreased bone density, and stroke.

Systematic population screening for thyroid disease in non-pregnant, asymptomatic adults was not recommended when last reviewed by the committee in 2018. This was because:

• the natural history of thyroid dysfunction was unclear
• it was not possible to determine the proportion of patients with subclinical or overt thyroid dysfunction who will normalise without clinical intervention
• suitable test cut-off thresholds for screening the general population for subclinical or overt thyroid dysfunction had not yet been defined
• consensus on what constitutes healthy levels of the FT3, FT4 and TSH hormones had not been reached in the literature
• there was an overall lack of evidence to demonstrate the benefits of treatment for screen-detected subclinical and overt thyroid dysfunction

Solutions for Public Health carried out the 2021 evidence map on thyroid disease. The aim of the 2021 evidence map was to address the gaps in evidence identified in the 2018 review by focusing on the following questions:

1. Has a test cut-off been identified which is suitable for population screening for overt and subclinical thyroid dysfunction?
2. Does early initiation of treatment for overt and subclinical thyroid dysfunction following screening, or at a pre-symptomatic stage, provide better outcomes compared to initiation of treatment following clinical detection or at a symptomatic stage?

The evidence map found no new evidence which reported on suitable test cut-offs for population screening. The evidence found on the treatment of subclinical hypothyroidism suggests no substantial benefit. The evidence map concluded that it is unlikely that a review of the available evidence in this area of treatment of subclinical hypothyroidism alone would lead to a change in the UK NSC’s position.

A 3-month public consultation hosted on the UK NSC website closed on 14 January 2022. Direct emails were sent to 15 stakeholders. The page was viewed 214 times and 2 consultation comments were received, one from the RCGP and one from a member of the public.

The RCGP agreed with the conclusion of the evidence map and the reaffirmation of the current recommendation not to screen for thyroid disease, adding that primary care practitioners would continue to consider thyroid disease as a differential diagnosis when patients are symptomatic.

The member of the public shared their personal experience of living with the condition. They outlined how the condition ran on both sides of their family and described the negative impact of a long diagnostic odyssey. They thought there should be testing in place for thyroid disease to enable early management of managing the condition early, particularly family testing.

Members noted the lack of studies on suitable test cut-offs for population screening. They also discussed the fact that the only available evidence on treatment was in relation to subclinical hypothyroidism. This pointed towards no substantial benefit of treatment for subclinical hypothyroidism compared to placebo or no treatment. Evidence comparing the early initiation of treatment to later treatment for overt and subclinical thyroid dysfunction was lacking and there was also an absence of evidence on overt hypothyroidism, as well as in relation to subclinical and overt hyperthyroidism. Members agreed this condition met the threshold to be archived and that should new evidence pointing towards benefit of screening or treatment effectiveness become available, this would have to be resubmitted via the annual call for topics.

The UK NSC agreed that a systematic population screening programme for thyroid disease in non-pregnant, asymptomatic adults should not be recommended in the UK at the current time.

Action 7: The committee agreed to archive thyroid disease in adults and this condition will only be looked at again upon receipt of further evidence of benefit of screening/treatment effectiveness via the annual call for topics.

14. Updates

14.1 NIHR NETSCC

The UK NSC noted the report prepared by the NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC) on research projects.

15. Next meeting

Friday, 24 June 2022