Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what assessment has been made of the potential impact that delays in access to newborn screening for spinal muscular atrophy will have on those not part of the upcoming in-service evaluation of screening for the condition.

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 in newborn screening services, starting in January 2027.

Over 400,000 babies would be offered screening as part of this ISE. 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 evaluation to be rolled out across the whole of England.

Spinal muscular atrophy (SMA) can be a devastating condition, and we recognise that if treatment is given before a baby shows any symptoms, outcomes can be significantly improved. However, any screening programme that would impact approximately 650,000 babies per year in the United Kingdom must be underpinned by high quality robust evidence that demonstrates that screening will do more good than harm. The ISE will 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.