Issued by: Department of Health and Social Care, NHS England, and National Institute for Health and Care Excellence

All babies in England to be screened for Spinal Muscular Atrophy

• National newborn screening programme for Spinal Muscular Atrophy (SMA) to be rolled out

• England-wide initiative will give clinicians a better chance of spotting SMA in babies before symptoms appear

• Early diagnosis of the disease can allow babies to live full and healthy lives

Babies across England will be tested for a rare but serious genetic condition from birth, giving them the best chance of successful treatment before symptoms appear.

The government will expand newborn screening for Spinal Muscular Atrophy (SMA) throughout the country as part of an evaluation programme. It will begin later this year and hundreds of thousands of babies will be screened thanks to the expansion of the scheme.

SMA can leave babies unable to sit up, crawl or walk. In the most severe cases, it stops them breathing or swallowing but, caught early enough, treatment can significantly improve outcomes for affected children.

Testing works through a simple heel prick to collect a small sample of blood from the baby, taken shortly after birth.

Secretary of State for Health and Social Care, James Murray, said:

"No parent should have to watch their child lose the ability to move or breathe, knowing that earlier treatment could have made all the difference.

"This expansion means babies across England will be tested from birth, giving them the best possible chance of a full and healthy life, and another step in the right direction as we do all we can to reduce health inequalities.

"I’m in awe of the campaigners who’ve worked tirelessly to raise awareness of this rare but very serious genetic condition. We’re moving faster and rolling screening out more widely to ensure children get the best treatment from the earliest possible moment."

The SMA screening evaluation will begin across England in the autumn, and the programme is moving faster than originally planned. Labs are set to start testing babies for SMA from October 2026 - three months ahead of schedule - after the government committed to speeding up the rollout earlier this year.

The Department of Health and Social Care will seek investment to fund the rollout.

A similar programme has already been established in Scotland drawing on funding from the private sector, and the Department of Health and Social Care will look to take a comparable approach in England, working collaboratively with partners to deliver the rollout ahead of schedule.

Campaigner Jesy Nelson said:

"After years of campaigning, it means so much to see the heel prick test for SMA begin rolling out from October, with implementation continuing throughout 2027 until every newborn screening laboratory across the UK is offering the test.

"Today is a day of hope. Knowing that future families will have access to early diagnosis and the opportunity for the best possible outcomes is something I’m incredibly proud to have supported. This is a victory for every family affected by SMA, whilst it can’t change the future of our children, I know it marks the beginning of a brighter future for future SMA families."

Giles Lomax, Chief Executive Officer of Spinal Muscular Atrophy (SMA) said:

"After years of campaigning by the SMA Community and our partner organisations, this is a hugely important step forward. When newborn screening for SMA begins later this year in October, thousands of babies will benefit from earlier diagnosis and access to life-changing treatment.

"We are delighted to see the confirmation that the remaining six screening laboratories will begin screening from October 2027, this demonstrates a clear commitment to making newborn screening available across England.

"No family should face a postcode lottery when it comes to a condition where every day without treatment can lead to irreversible loss of motor neurons. We are incredibly grateful to the families, clinicians, researchers, supporters and campaigners who have helped us reach this point, and we look forward to the day when every newborn across the whole of the UK is offered this simple, life-changing test."

Through the National Institute for Health and Care Research (NIHR), the government has already announced funding for a £4.1 million evaluation to assess the feasibility and effectiveness of adding SMA to the heel-prick blood test given to newborns as standard.

This study, led by scientists at the University of Oxford, will inform future UK National Screening Committee recommendations on SMA screening for newborns.

Additional quotes

Prof. Lucy Chappell, NIHR CEO and DHSC Chief Scientific Adviser said:

"Spinal Muscular Atrophy is a devastating condition, and we know how deeply families have wished for a way to detect it before its cruel symptoms begin. The NIHR is proud to fund this £4.1 million evaluation study. By testing this screening in a real-world NHS setting, our researchers will gather the vital evidence needed to translate early detection into rapid, life-saving action - offering babies the very best start in life."

Michelle Kane, Director of Screening and Vaccination at NHS England, said:

"This is a major step forward for babies and families as spinal muscular atrophy can progress quickly, and identifying it before symptoms appear means babies can get specialist treatment when it can make the biggest difference.

"Expanding the evaluation across England means all babies will now have access to this life-changing test and help build the evidence independent experts needs to make a recommendation.

"The courage Jesy Nelson has shown in sharing her family’s experience and campaigning for other families is truly remarkable."

Andy Fletcher, Chief Executive of Muscular Dystrophy UK said:

"The decision to introduce newborn screening for SMA across England is a landmark moment for the SMA community and the many partners who have spent years working to make it a reality.

"Newborn screening should never be a postcode lottery. Which is why we’re delighted that, following campaigning and the recent debate in Parliament, the government have committed to ensuring every newborn across the whole of England will be screened for SMA commencing from October 2027.

"This is a huge achievement for our community and everyone who has come together to campaign. We know that with a condition like SMA, time is everything, and this development will be life-changing for future generations of children born with the condition."

Tags

More Like This

A heartbreaking race against time: £600,000 needed to save 9-month-old UK baby Aiyla's life, Zolgensma is the only hope against SMA type 1.

UAE’s Medcare Treats First International SMA Patient With Revolutionary Intrathecal Gene Therapy

“One Month to Save Lives”: Families race against 1st August deadline to secure access to life-saving rare disease drug

Dubai’s Medcare Hospital Becomes the World’s First to Treat an Adult Spinal Muscular Atrophy (SMA) Patient Outside the US

Patients to benefit from cutting-edge NHS care from their homes

The Department of Health - Abu Dhabi provides gene therapy for Duchenne Muscular Dystrophy for the first time in Abu Dhabi and outside the US

National maternity investigation launched to drive improvements

Sickle cell patients to get better treatment after £9m boost