Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what comparative assessment he has made of expected outcomes for babies with spinal muscular atrophy living in areas (a) included in the in-service evaluation of newborn screening for SMA and (b) not included in the in-service evaluation.

The Government recognises the challenges faced by those living with rare diseases and their families and is committed to improving outcomes. This is why the National Health Service is planning a large-scale in-service evaluation (ISE) of screening for spinal muscular atrophy (SMA) in newborn screening services. This ISE is due to start in January 2027 and will offer screening to over 400,000 babies.

As the ISE is still in the planning stages, the Department has not yet made a comparative assessment of expected outcomes for babies identified through the evaluation compared with babies born in areas not included in the evaluation.

Babies born outside the evaluation would continue to receive the current standard of care, including access to specialist clinical assessment and National Institute for Health and Care Excellence approved treatments where clinically appropriate. Clinical decisions for babies with suspected or confirmed SMA are made by specialist clinicians, regardless of where a child is born.

My Rt Hon. Friend, the Secretary of State for Health and Social Care, has asked NHS England to investigate whether it would be appropriate and feasible for the ISE to be rolled out across the whole of England.

Any screening programme that would impact approximately 650,000 babies per year in the UK must be underpinned by high quality robust evidence that demonstrates that screening will do more good than harm. The ISE will help inform a future UK National Screening Committee recommendation on whether screening for SMA should be added to the NHS Newborn Blood Spot Screening Programme.