The study, titled SENS (Service Evaluation for Newborn Screening for SMA), will assess the feasibility, acceptability, clinical effectiveness and cost-effectiveness of introducing SMA screening into the NHS newborn screening programme. The study is expected to begin in August 2026.
Led by Professor Laurent Servais in the Department of Paediatrics at the University of Oxford, the study will involve collaboration across leading UK universities, NHS laboratories, and patient organisations, including SMA UK. The programme is designed to screen up to 755,000 newborns across England and generate the robust evidence required to inform national policy decisions.
SMA is a rare but severe genetic condition that leads to progressive muscle weakness and can be life-threatening in infancy. While new disease-modifying therapies are now available in the UK, their effectiveness depends critically on early, pre-symptomatic treatment.
Newborn screening enables diagnosis shortly after birth, before symptoms appear, allowing timely intervention that can dramatically improve outcomes, including survival, mobility and quality of life.
