Every Newborn in England to Be Offered Screening for Spinal Muscular Atrophy

Newborn babies across England will be offered screening for spinal muscular atrophy through the routine heel-prick blood test, under an England-wide evaluation programme beginning in October 2026.

The government has announced that screening for spinal muscular atrophy, known as SMA, will be expanded across England, allowing the rare genetic condition to be identified before symptoms appear.

Testing is due to begin in selected newborn screening laboratories from October 2026, with the remaining laboratories expected to begin screening from October 2027. The government says the expansion will ultimately give all babies born in England access to the test.

The screening will form part of an in-service evaluation rather than an immediate permanent addition to the national screening programme. The evaluation will examine whether SMA screening is feasible, acceptable, effective and cost-effective when delivered through routine NHS services. Its findings will inform a future recommendation from the UK National Screening Committee.

What is spinal muscular atrophy?

Spinal muscular atrophy is a rare inherited condition that affects the nerves controlling movement.

It can cause progressive muscle weakness and difficulties with sitting, crawling, walking, breathing or swallowing. Symptoms often begin during infancy or early childhood, although some forms of SMA can develop later in life.

The NHS says most common forms of the condition are caused by an altered SMN1 gene inherited from both parents. SMA does not affect intelligence or cause learning disabilities.

Around 70 babies are estimated to be born with SMA in the UK each year. The severity of the condition varies, but Type 1 SMA usually develops in babies younger than six months and can be life-limiting without treatment.

Why early diagnosis matters

SMA damages motor neurons, the nerve cells that send signals from the brain and spinal cord to the muscles. Once these cells have been lost, the damage cannot simply be reversed.

Identifying the condition before symptoms appear can therefore allow babies to be referred rapidly for specialist assessment and, where appropriate, treatment.

Great Ormond Street Hospital says evidence has shown that babies treated before symptoms develop can experience significantly improved outcomes compared with those diagnosed after symptoms begin.

The NHS currently commissions three disease-modifying treatments for eligible patients with SMA: nusinersen, risdiplam and the gene therapy onasemnogene abeparvovec, commonly known by the brand name Zolgensma. The most appropriate treatment depends on factors including the child’s age, symptoms and clinical circumstances.

How will babies be screened?

The screening will use the routine newborn blood spot test, commonly called the heel-prick test.

A small blood sample is collected from the baby shortly after birth and placed onto a special card for laboratory testing. The SMA test will be carried out alongside the established newborn screening process rather than requiring a separate invasive procedure.

Earlier plans indicated that the evaluation would initially operate through seven laboratories that already had the necessary equipment. The government has now committed to extending the evaluation across England, with the remaining six newborn screening laboratories expected to begin testing from October 2027.

Evidence will continue to be collected

The National Institute for Health and Care Research is providing £4.1 million for the evaluation, which will be led by researchers at the University of Oxford.

Researchers will assess how well the screening pathway works in real NHS settings, including how babies with a positive screening result are referred, diagnosed and offered treatment.

Although the government has described the announcement as an England-wide rollout, the programme remains an evaluation. A definitive decision about whether and how SMA screening should continue as part of the permanent national newborn screening programme will be informed by the evidence collected and advice from the UK National Screening Committee.

A major change for families

For families affected by SMA, the expansion represents an opportunity for the condition to be identified before visible muscle weakness or other serious symptoms develop.

It also reflects a broader move towards diagnosing treatable rare diseases earlier, when medical intervention may provide the greatest benefit.

Screening is expected to start from October 2026 and continue expanding during 2027, with nationwide access across England planned from October 2027.

Medical disclaimer: This article is for general information only and does not provide medical advice, diagnosis or treatment. Parents and carers with concerns about a baby’s health or development should contact an appropriate healthcare professional.