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More about the Inservice Evaluation

More about the Inservice Evaluation

Read this blog from Corinna Clark, Researcher at the university of Warwick to find out how you can add your experiences and views to the ISE. 

Last updated: 10th August 2026

The In-Service Evaluation (ISE) aims to:

  • screen a percentage of babies born in the UK for SMA
  • gather UK-specific evidence on how screening works in practice
  • test how quickly babies can move from a screening result to diagnosis and treatment
  • inform the NSC’s final decision on whether SMA should be added to the national screening programme

Starting in October 2026, the ISE will use phased roll out of seven existing newborn screening laboratories in England. These already have the required testing equipment. By October 2027 they will all be operating.

By October 2027, these sites could screen approximately:

  • 404,000 babies per year
  • around 72% of babies  in the UK.

In October 2027 the other six screening laboratories in England will start operating as part of the ISE.

By October 2027 all babies in England should be offered screening as part of the ISE.

Scotland started screening in March 2026. The data they are collecting will also inform the ISE.

Using 2024 birth rate data, these plans currently leave these babies without screening as part of the iSE:

  • 27,000 babies per year in Wales
  • 19,400 babies per year in Northern Ireland

NHS England has been working on detailed planning for the ISE in England. This is a huge and complex task. It includes:

  • Getting the laboratories ready
  • Training health professionals
  • Having information ready for parents
  • Agreeing and managing the budget

NHS England’s ISE implementation group started this detailed work in December 2025 .

The National Institute of Health and Care Research (NIHR) funds the research for the ISE. In late May 2025 it invited Independent Academic Research Groups (IRGs) to design an ISE study that would comply with their very strict research criteria. This includes having a study design that the NIHR considers sufficiently robust. It must allow a comparison between the cost and clinical outcomes for babies and parents offered screening compared with those not offered screening.

In March 2026 the NIHR Technology funding committee awarded the research grant to the one IRG applicant:

  • The University of Oxford working in partnership with SMA REACH UK, the University of Sheffield, the University of Warwick, King’s College London and SMA UK.

The study design had to include a one-year step roll out of the laboratories to meet the NIHR requirements. The research funding wouldn’t have been released without this.

The IRG will monitors and collects the answers to the questions the UK National Screening Committee (NSC) has about future NBS for SMA.

The research will explore all the questions the NSC wants answered. This will include  listening to the experiences of parents and clinicians to find the best and quickest way babies can move from a screening result to diagnosis and treatment.

Is Screening for SMA Cost effective?

This is one of the questions the NSC wants answered.

On behalf of the  UK NSC, one of the partners, the Sheffield Centre for Health and Related Research (ScHARR) developed a cost-effectiveness model. This assessed NBS for SMA compared with no screening for SMA.

Across ALL analyses, the model found that implementing screening could result in better health outcomes and lower costs than the current approach of no screening.

Despite this strong evidence, and the existing international data, the UK NSC decided to carry on with the ISE and gather additional UK-specific data.

The economic model will use the real-world data collected by the ISE  to show if screening for SMA in the UK is cost effective.

 

In January 2024, clinicians, patient groups, NHS England and other experts were invited to join the NSC’s  ISE/SMA Partnership to progress plans. They set up:

  • The laboratory sub-group– to confirm the processes that will need to be set up in UK blood test laboratories
  • The clinical pathway sub-group – to establish the fastest possible timeline  between an ‘SMA suspected’ test result, its confirmation and the start of treatment.

This set up a task and finish group – to develop:

    • information for parents;
    • information and training for health professionals inviting parents to have their baby screened
  • The data and methodology sub-group – to ensure that the ISE design will meet the overall NSC objectives.

The sub-groups reported to the overarching ISE/SMA Partnership Board. Its members represented the many groups and stakeholders involved in developing this complex evaluation. Together the groups worked  on:

  • how to get the NHS ready
  • how to collect the evidence the NSC needs for a decision

SMA UK representatives brought the patient perspective to these groups and the Board. We ensured  real world experience and expertise is carefully considered throughout the planning process.  We advocated for the ISE’s earliest possible introduction.

In June 2023, following many years of advocacy and campaigning by patient groups and clinicians, the UK NSC announced plans to run an ISE

in January 2024, clinicians, patient groups, NHS England and other experts were invited to join the NSC’s  ISE/SMA Partnership to progress plans.

In Autumn 2024, the laboratory group reported that it would be possible to aim to begin screening for SMA in the ISE in mid or late 2025. This was provided that the 6 labs which then tested blood spot samples for SCID were used.

At this time, NHS England said that the 2025 timescales were challenging given current resource constraints. But they confirmed there was high level NHSE commitment to the project.

The change in Government at the end of 2024 brought with it a major spending review of all NHS commitments. The ISE got caught up in this. The ISE/SMA Partnership Board and all those involved did all they could to obtain a green light for it to go ahead as planned.