Transparency data

UK NSC minutes March 2024

Updated 19 December 2024

This meeting was held on 21 March 2024 via Microsoft Teams.

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
• Dr Bethany Shinkins – Test Expert
• Professor Anne-Marie Slowther – Reader in Clinical Ethics, 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 

• Martin Allaby – Consultant in Public Health and Evidence-based Healthcare, National Institute for Health and Care Excellence (NICE)
• Nicola Brink – State of Guernsey
• Lisa Douet – National Institute for Health and Care Research (NIHR)
• Dr David Elliman – Clinical lead for NHS Newborn and Infant Physical Examination Programme and NHS Newborn Blood Spot Screening Programme
• Elizabeth Luckett – Senior Screening & Immunisation Manager NHS England (NHSE) South West
• Diane Matthews – State of Guernsey
• Professor Zosia Miedzybrodzka – Clinical Lead of the Scottish Genomics Network
• Steve Powis – National Medical Director, NHSE
• Deborah Tomalin – Director of Screening, NHSE
• Miranda Lawton – Programme Manager
• Jennifer Taylor – Public Health Registrar
• Tom Callender – Public Health Registrar
• Maeve Gill – Public Health Registrar

1.3 UK Health Department officials 

• Dr Carol Beattie – Northern Ireland
• Alexander Cruickshank – Team Leader, National Screening Programmes, Scottish Government
• Nimisha De Souza – Department of Health and Social Care (DHSC)
• Dr Heather Payne – Senior Medical Officer for Maternal and Child Health, Welsh Government
• Dr Tasmin Sommerfield – National Screening Oversight (NHS Scotland) 
• Helen Tutt – Welsh Government 
• Susan Thompson – Scottish Government

1.4 Secretariat    

• Mike Harris – Head of UK NSC Transparency and Public Understanding
• Ailsa Johnson – Secretariat Network Convenor
• Prof Anne Mackie – Director of Programmes, UK NSC
• John Marshall – Evidence Lead
• Anne Stevenson – National Lead for Screening Feasibility, Evaluation and Development
• Omaer Syed – Senior Evidence Review Manager
• David Thompson – Senior Evidence Review Manager
• Dr Cristina Visintin – Research Lead

1.5 Invited

• Nadia Permalloo, Quality and Improvement Lead, NHSE
• Rebecca Till, Antenatal Pathway Implementation Lead, NHSE

1.6 Apologies from members

• Chris Hyde – Public Health Specialist
• Anneke Lucassen – Clinical Geneticist

1.7 Apologies from observers / officials

• Silvia Lombardo – Secretariat
• Zeenat Mauthoor – Secretariat
• Jo Harcombe – Secretariat

2. 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 10 members and was therefore quorate. The committee noted apologies from Chris Hyde and Anneke Lucassen alongside those listed from officials and observers.

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 this meeting.

Sian Taylor Philips declared a potential interest under discussion item on artificial intelligence (AI) in breast screening – no action was required.

4. Minutes of the last meeting

The committee approved the minutes from the 10 November 2023 meeting as a true and accurate record of the meeting.

There were 3 actions identified from the November meeting which were noted as being in hand and/or completed:

4.1 Update on actions from the November meeting:

• AAA effectiveness report to be brought to a future UK NSC meeting once completed (expected in June or November 2024) – noted for the June and/or November agenda.

• Tyrosinaemia to be added to the June UK NSC meeting for provisional report to be presented to the committee – noted for the June agenda. It was noted that the recommendation has been approved in England for newborn screening for tyrosinaemia

• UK NSC secretariat to meet with NICE colleagues to discuss the clinical care management of vasa praevia – on the agenda for discussion, under item 5: Director’s update.

Ongoing open actions were noted as follows:

• June 2022 –  UK NSC to look into agreeing cost effectiveness thresholds and guidance as part of wider work to develop the new committee processes – in hand and to bring back to a future meeting

5. Matters arising – Director’s update

A verbal update was provided by Prof Anne Mackie for the following items. 

5.1 Vasa praevia

Members acknowledged the devastating impact of this condition on families and valued the personal stories of the experiences of vasa praevia that have been shared through the consultation.

Targeted screening for vasa praevia has been examined on previous occasions and it has been noted that the test is not sufficiently accurate to confidently recommend.

Following discussions with NICE it has been agreed that vasa praevia should be handled as clinical management. The committee approved a suggestion to formally write to the Royal College of Obstetricians and Gynaecologists (RCOG) to recommend that its guidelines on vasa praevia detection and management should be updated with a view to considering auditing activity. 

It was noted that NICE provides guidance on the detection of placenta praevia and that the RCOG is best placed to consider auditing activity.

Action 1: UK NSC to formally write to RCOG to recommend the updating of its vasa praevia guidelines.

5.2 Multi-cancer early detection tests (MCEDs)

Tom Callender presented on the ethical issues raised by MCEDs in screening.

The committee noted the challenges of MCEDs, in particular the ethical complexities on which there appears to be an absence of guidance and information. Given the growing interest it is crucial for the UK NSC to consider the ethical parameters around testing for multiple conditions.

With the current developments of whole genome sequencing (WGS) and the Generation Study and proposals to expand newborn screening it was suggested that it would be beneficial to consider a generic ethical approach to considering screening evidence for multiple conditions as well as consideration of the potential effects on existing screening programmes.

It was agreed that publication of an ethical report should be considered in addition to a position paper. The committee strongly supported the proposal to establish a task and finish group for MCEDs and the associated ethical issues.

The task and finish group will provide an opportunity for members of the ARG and RMG to consider the issues raised and contribute to the development of potential outputs.  

5.3 Artificial Intelligence (AI)

The innovations and use of AI in screening programmes was discussed, noting the commission for a Health Technology Assessment (HTA) trial and the prospective studies now published from European programmes.

5.4 Spinal muscular atrophy (SMA) in-service evaluation (ISE)

The ISE planning work is progressing well working with the partnership board. 

Post meeting note: an update from the recent SMA ISE Partnership Board meeting is available on the UK NSC blog

5.5 Newborn blood spot screening ISE

Dr Graham Shortland informed the committee of the proposal to establish a multi-condition ISE of screening for additional conditions within the NHS Newborn Blood Spot Screening Programme. This proposal is in its early stages and further discussion is still required to take it forward. 

The UK NSC was asked to consider the merits of this proposal. It was agreed that the parameters of the proposal will be presented to the committee at a future meeting once they have been established.

6. Edwards’ syndrome antenatal screening pathway modification: public consultation

The UK NSC welcomed NHSE colleagues Liz Luckett (Senior Screening & Immunisation Manager), Nadia Permalloo (Quality and Improvement Lead) and Rebecca Till (Antenatal Pathway Implementation Lead) to discuss the findings of this rapid review.

Currently, the offer of screening for Edwards’ syndrome (T18) occurs using the combined test as part of the NHS Fetal Anomaly Screening Programme (NHS FASP) pathway between 10 and 14 weeks of pregnancy.

The international evidence base on the use of analytes from the quadruple test to screen for Edwards’ syndrome was reported to the FMCH Reference Group in January 2021. This concluded that further work was required to understand the accuracy of the test to align with UK practice. The FMCH agreed that, given the proposal was to offer the test in a small subset of the screening population, the use of retrospective FASP data might be a proportionate mechanism to achieve this. 

In January 2022, a paper was presented to FMCH which summarised the modelling of the existing data on the detection of Edwards’ syndrome using the quadruple test. The FMCH asked the authors to update the paper to include Patau’s syndrome (T13) along with Edwards’ syndrome so that the quadruple test mirrored screening in the first trimester using the combined test.

On 21 February 2024, the UK NSC opened a truncated public consultation of 2 weeks on the addition of the quadruple test to the Edwards’ syndrome antenatal screening pathway.

The consultation received 10 responses. Most of the comments were explicitly supportive of the introduction of the quadruple screening test to the antenatal screening pathways for Edward’s syndrome.

The committee expressed its appreciation for the comments received given the short consultation period. Members noted the comments and agreed to recommend the addition of the quad test to the T18 antenatal screening pathway.

7. Bowel cancer screening horizon scanning

Dr Tasmin Sommerfield provided a summary of the UK NSC’s bowel cancer screening horizon scanning event to identify developments in research, policy and new technologies.

The topics discussed at the event included risk stratification, novel screening tests, Lynch syndrome, future research and AI developments.

Further details and presentations are available in a UK NSC Blog article

8. Stakeholder update

Mike Harris presented an update on stakeholder engagement activity and analytics data from the UK NSC’s online platforms.

The UK NSC secretariat has engaged proactively with patient organisations, the NHS, devolved governments, industry and academics on a variety of workstreams, including cancer screening topics and the ISE of newborn screening for SMA.

The web analytics data showed that around 300 users per day regularly visit the UK NSC recommendations website, with the targeted lung cancer screening recommendation being the most visited page. UK NSC welcomes major new prostate cancer screening research was the most read blog post in recent months.

The number of subscribers to the UK NSC Blog increased from 1,723 in November 2023 to 2,085 in March 2024.

9. FMCH Group update

Dr Sharon Hillier, Chair of the FMCH Reference Group, led the committee in condolences for Dr Mark Sharrard, who sadly passed away earlier this month after a short illness.

Mark, a consultant paediatrician, specialising in metabolic medicine for over 20 years, working in South Yorkshire, North Lincolnshire and East Midlands, was a valued member of the FMCH reference group and we are immensely grateful for all his work and generosity in supporting the FMCH and UK NSC. 

Mark’s extensive knowledge, advice and guidance has been an enormous benefit to the FMCH and UK NSC over the years. Recently he had contributed enormously to the developments in the expanded newborn screening service as well as the plans to implement newborn screening for tyrosinemia. 

Mark was an exceptionally dedicated, caring doctor and he will be sadly missed by all.

Dr Hillier updated on the key discussions from the January meeting and confirmed that, following successful recruitment, the FMCH Reference Group welcomed 8 new members to the January meeting.  The confidential topics discussed at the January meeting included non-invasive prenatal testing, Tyrosinaemia Type 1 screening, and dental disease in children aged 9 and under.

10. ARG update

The ARG chair, Dr Ros Given-Wilson, confirmed that the February meeting had been cancelled, and provided a confidential update on recent activity.  

11. RMG update

Dr Sian Taylor-Philips gave a verbal update on the confidential work from the RMG meeting held on 29 February 2024.

A change in membership has taken place with Jason Oke stepping down after having moved from academia to industry. It was agreed that health economics knowledge was needed as part of the RMG membership and Olivia Wu from Glasgow University will be joining the group. The RMG will be looking to expand its membership in due course and hopes to recruit from the four nations quantitative methodologists with experience in maternal health.

The group reviewed three applications for research in line with the published process guidelines.

12. Any other business

Anne Mackie thanked the clinical and academic experts, and chairs of the various groups for all their support and work for the UK NSC.

Results of the Inequalities survey will be presented at the next meeting on 20 June 2024.