On Thursday 28th May, The National Institute for Health and Care research (NIHR) have released a ‘research call’ in response to the UK National Screening Committee requiring further information into “the feasibility, acceptability, effectiveness, and cost-effectiveness of newborn screening for spinal muscular atrophy if SMA were to be added onto the routine newborn blood spot screening programme.

In practical terms, the NIHR is asking for an academic institution to take on the job of looking at all the data that comes out of the planned in-service evaluation (which is like a pilot of newborn screening for SMA ). Their evaluation of the data will help inform the decision whether or not to screen the UK for SMA.

This is a key part of the In-Service Evaluation and despite several delays over the last 2 years is positive milestone.

Our CEO Giles said ‘it’s really positive to see this milestone achieved nearly 2 years since the ISE was announced in 2023. SMA UK will continue to work with partners including the UK National Screening Committee to highlight the urgent need for SMA to be added to the existing blood spot programme”