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Spinal Muscular Atrophy: Babies

Asked by Freddie van MierloLiberal DemocratDepartment of Health and Social CareTabled Answered 29 April 2025UIN 48034

The question

To ask the Secretary of State for Health and Social Care, what information the UK National Screening Committee has provided on the (a) format, (b) scale and (c) duration of the upcoming in-service evaluation of newborn screening for Spinal Muscular Atrophy in the NHS.

Answered by Ashley Dalton

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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