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Last week the Newborn Screening Committee published their most recent progress blog which included a breakdown of evidence for SMA screening.  

Earlier this year the Sheffield Centre for Health and Related Research (SCHARR) at the University of Sheffield completed a modelling study to understand the cost effectiveness of newborn screening for SMA. This was informed by data from clinical trials, published literature and real world data.  

The model found that implementing newborn screening across the UK every year will: 

  • Prevent 2 babies requiring permanent ventilation 
  • Prevent around 3 children from early deaths 
  • Prevent 30 babies from being confined to a ‘sitting state’  
  • And enable 37 babies to live a largely normal life. 

According to their modelling it will save the NHS £5.7million per year which doesn’t include the wider social and caregiver costs.  

All the analyses have suggested that implementing screening could result in better outcomes and lower costs compared to the current approach of no screening plus treatment 

We are pleased to see that these results highlight the cost savings of introducing NBS for SMA. 

However, despite these results the UK NSC will commission an In-service evaluation to fill the gaps in evidence. Read more about the NIHR Research call here 

The current indicated timelines could mean it will be 2027 till a baby will be tested, 5 years since UK NSC endorsed a two fold approach to review the case for newborn screening.  

SMA UK are working constructively with all partners and stakeholders to ensure babies are screened for Spinal Muscular Atrophy as quickly as possible. 

Read the full .Gov blog here.