Major UK study to evaluate newborn screening for spinal muscular atrophy

SENS study to assess feasibility, effectiveness and family experience of introducing SMA screening into the NHS newborn screening programme

A major new UK study will evaluate the introduction of newborn screening for Spinal Muscular Atrophy (SMA) into the National Health Service (NHS) newborn screening programme, with researchers aiming to assess its acceptability, feasibility, clinical effectiveness, and cost-effectiveness.

The study, known as SENS (Service Evaluation for Newborn Screening for SMA), is scheduled to begin in August 2026, with newborn screening expected to commence in October 2026.

The initiative follows recently published research from the University of Warwick, which surveyed more than 9,500 people and found that over 90 per cent of respondents support newborn screening for SMA.

However, the study also identified significant concerns regarding parental anxiety and the psychological impact of receiving a diagnosis, underscoring the importance of how and when screening results are communicated to families.

Commenting on the study, Professor Boardman said, “SMA screening has the power to transform lives. At Warwick, we've already been working with families affected by SMA, and we know that the way results are communicated, and the support available in that moment, is every bit as important as the test itself. This study gives us the opportunity to put families at the very heart of how national screening is designed and delivered.” 

SMA is a rare but severe genetic disorder that causes progressive muscle weakness and can be life-threatening during infancy. The availability of disease-modifying therapies in the UK has significantly improved treatment prospects, but their effectiveness depends heavily on diagnosis and treatment before symptoms appear, making early screening particularly valuable.

The SENS study brings together researchers and healthcare experts from University of Oxford, the University of Warwick, University of Sheffield, King's College London, NHS newborn screening laboratories, and SMA UK. 

Laurent Servais, the overall study lead from the University of Oxford, said, “This study represents a decisive step towards ensuring that every child born with SMA in the UK has the opportunity to be diagnosed and treated before irreversible damage occurs. We now have therapies that can fundamentally change the trajectory of this disease if we can identify affected infants early.” 

Giles Lomax, Chief Executive of SMA UK, added, “For families affected by SMA, time is everything. A diagnosis through newborn screening can mean the difference between a life limited by severe disability and one with far greater independence and opportunity. This study brings us closer to a future where no child misses that critical window for treatment, and where screening is available to every newborn across the UK.”