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<p>In June 2023, the UK National Screening Committee (UK NSC) recommended that a modelling
study be carried out alongside an in-service evaluation of spinal muscular atrophy
(SMA) screening in the National Health Service. Around 70 babies a year are born with
SMA in the United Kingdom (around 1 in every 10,000 live births), with approximately
60% of those having type 1 SMA (SMA1).</p><p> </p><p>The new model will help define
important issues for the in-service evaluation, while the evaluation will be used
to collect data to feed into the model and test its assumptions. This important work
will give the UK NSC the evidence it needs to assess how newborn screening for SMA
might work safely in the UK.</p><p> </p><p>Work is still in the planning stages therefore
timescales are not established yet. The UK NSC will keep ministers informed, and the
public up to date on progress via its blog and ongoing stakeholder engagement.</p>
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