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Written question asked by Peter Dowd (Labour) on Friday, 1 September 2023, in the House of Commons. It was due for an answer on Tuesday, 5 September 2023. It was answered by Will Quince (Conservative) on Wednesday, 6 September 2023 on behalf of the Department of Health and Social Care.

Spinal Muscular Atrophy: Screening

Question

To ask the Secretary of State for Health and Social Care, what assessment he has made of the adequacy of the timelines for the UK National Screening Committee’s in-service evaluation for severe combined immunodeficiency screening in the NHS; and whether his Department has plans to reduce the timeline for the upcoming in-service evaluation for spinal muscular atrophy screening.

Answer

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).

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.

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.

Secondary information

Type
Written question
Reference
196166
Session
2022-23
Grouped for answer
Yes
Subjects
NHS Screening UK National Screening Committee Spinal muscular atrophy
Link
View this Written question on www.parliament.uk