Spinal Muscular Atrophy: Babies

(asked on 24th April 2025) - View Source

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what assessment he has made of the potential merits of launching newborn screening for Spinal Muscular Atrophy alongside the upcoming launch of newborn screening for severe combined immunodeficiency.


Answered by
Ashley Dalton Portrait
Ashley Dalton
Parliamentary Under-Secretary (Department of Health and Social Care)
This question was answered on 29th April 2025

The UK National Screening Committee (UK NSC) is working with the spinal muscular atrophy (SMA) partnership board to scope out the potential shape of the in-service evaluation into SMA. The partnership board includes clinicians, academics, patient representatives, the National Institute for Health and Research (NIHR), NHS England, and the UK NSC. The final decision on the exact format, scale, and duration will be determined following a successful NIHR tendering process. The timescale for the implementation of the SMA in-service evaluation will not be confirmed until after the 2025 Spending Review.

The UK NSC is aware that screening for SMA and severe combined immunodeficiency uses the same test, and as such there may be saving opportunities through economies of scale, if the two conditions are determined to be suitable for a screening programme. This is still under consideration by the committee.

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