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We’re delighted to see that progress is being made on the UK National Screening Committee (UK NSC) in-service evaluation (pilot) for newborn screening for SMA. 

The UK NSC have written a blog post to give a progress update on their work to assess newborn screening for SMA. Here’s an excerpt from the update:


In August, we blogged about the UK National Screening Committee’s (UK NSC’s) assessment of newborn screening for spinal muscular atrophy (SMA). 

The project’s next steps, as endorsed by UK NSC committee members at their June 2023 meeting, are to:

    • develop a new comprehensive and flexible cost-effectiveness SMA screening modelling study for the UK screening context
    • start scoping an in-service evaluation (ISE) of newborn screening for SMA in real world NHS services in the UK

You can read the full blog here >

Following the progress update, our CEO Giles Lomax commented:

‘We are pleased to see continued progress being made with the announcement that an SMA ISE Oversight group will be formed to support the development of the in-service evaluation across the UK, with an initial meeting planned for November. It’s really important that we keep up the momentum to ensure SMA does get added on the blood spot test’