Spinal Muscular Atrophy: Screening
The question
To ask the Secretary of State for Health and Social Care, whether the UK National Screening Committee plans to fast track the implementation of an in-service evaluation for newborn screening for spinal muscular atrophy.
Answered by Ashley Dalton
Progress is being made in planning and developing work to shape an in-service evaluation (ISE) of newborn blood spot screening for spinal muscular atrophy (SMA).
This follows a recommendation made in 2023 by the UK National Screening Committee which advises ministers on all aspects of population and targeted screening for an ISE in National Health Services. An ISE is needed to answer several outstanding questions related to the implementation of a newborn screening programme for SMA.
Planning for the ISE is a partnership between the Department, NHS England, the National Institute for Health and Care Research (NIHR), and other stakeholders.
Earlier in the year, the NIHR published their Health Technology Assessment research brief to appoint researchers for this work. Applications closed at the end of September 2025, and final funding decisions are expected in spring 2026. A decision on the shape and roll out of the ISE will be made after the research call process has concluded.
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