Current status: Initiated by the Scottish Government. Answered by Neil Gray on 5 September 2025
To ask the Scottish Government whether it will provide an update on its plans to pilot spinal muscular atrophy screening in Scotland.
Based on current planning, in early 2026, Scotland will become the first country in the UK to begin an in service evaluation (ISE) of Spinal Muscular Atrophy (SMA) screening. Under the plans, all babies in Scotland will be offered screening for the condition for at least the next two years.
The Scottish Government recognises that SMA can be devastating for babies and families, and supports any intervention that can be shown to improve the quality of life for those affected.
While there is evidence around the benefits of SMA screening, the UK National Screening Committee (UK NSC) requires further supporting evidence before it can recommend it as a long term part of the newborn screening programme.
This ISE will allow the NHS to potentially find and treat babies with SMA earlier than they otherwise might have, and will generate valuable data to inform the UK NSC’s final recommendation on SMA screening.
The evidence generated by the Scottish ISE will be submitted to the National Institute for Health and Care Research (NIHR), which will analyse it alongside data from the planned SMA ISE in England.