Guidance

Introduction of spinal muscular atrophy (SMA) screening in England: Frequently asked questions (FAQs)

Published 30 September 2026

Applies to England

1. About Spinal Muscular Atrophy

1.1 What is spinal muscular atrophy (SMA)?  

Spinal Muscular Atrophy (SMA) is a rare genetic inherited condition. It affects the nerves that control muscles, which can make it hard to move, breathe or swallow. In the worst cases, it can be life-threatening.  

There is no cure for SMA, but there are effective treatments that can help to reduce the symptoms. 

There are different types of SMA. Each type of SMA can affect people in different ways. The most severe form - SMA type 1 - develops within the first six months of life and, without treatment, can severely limit life expectancy. Other forms of SMA - type 2, type 3 and type 4 - develop later and can impact on mobility and daily life differently.  

More information on the symptoms of SMA and how they vary by type can be found on the SMA UK and Muscular Dystrophy UK websites. 

1.2 How common is it? 

SMA affects around 1 in 10,000 babies, meaning that in England around 60 – 70 babies are born with the condition each year. The most common type of SMA is SMA Type 1 which, according to figures from SMA UK, accounts for 60% of all cases. 

1.3 How do babies get SMA? 

Babies get SMA if they inherit two altered copies of a specific gene (SMN1), one from each parent. Parents who carry the altered gene usually have no symptoms themselves.  

1.4 Can SMA be treated? 

Yes. There are treatments available on the NHS, including gene therapy. These treatments work best when started as early as possible, ideally before symptoms appear. They cannot reverse existing nerve damage, but they can prevent further damage. If given before symptoms start, the drugs can stop symptoms from developing.  

2. About SMA screening

2.1 What is SMA newborn screening? 

The newborn blood spot test is usually taken when babies are five days old to check for certain conditions. As part of an NHS in-service evaluation beginning in October 2026, screening for SMA will be included in the newborn blood spot test in parts of England.  

2.2 Why is SMA screening being introduced? 

Being diagnosed with SMA before symptoms start gives babies the best chance of being successfully treated for the condition. Screening can be life-changing for families, because a child diagnosed early with SMA can receive the treatment needed to give them a better chance of being able to sit, walk, feed and breathe independently.  

2.3 How many babies could benefit from SMA screening? 

The UK National Screening Committee (UK NSC) research indicates that introducing SMA screening in England could, each year, prevent around 3 early deaths; prevent around 2 babies from needing permanent ventilation; prevent around 30 babies from being confined to sitting; and enable around 37 babies to live largely normal lives.  

2.4 When will SMA screening be available? 

Screening for SMA will be introduced in a phased approach as part of an in-service evaluation. The first newborn blood spot laboratory will begin screening in October 2026 with others across the country following at two-monthly intervals. It is expected that all babies across England will be offered SMA screening by spring 2028. Once the evaluation is complete, the UK NSC will use the information gathered to decide whether to include SMA screening as standard within the newborn blood spot programme. 

SMA screening will be rolled out in two phases. In the first phase, SMA screening will be available in line with the below schedule:  

Newborn Blood Spot Laboratory	Start dates
Birmingham	01/10/2026
Manchester	01/12/2026
South West Thames	01/02/2027
South East Thames	01/04/2027
Great Ormond Street Hospital	01/06/2027
Sheffield	01/08/2027
Newcastle	01/10/2027

 SMA screening will be expanded to the remaining laboratories in Portsmouth, Oxford, Cambridge, Bristol, Leeds and Liverpool following Phase 1.  

2.5 Why is it only an evaluation? Will babies continue to be screened for SMA after the evaluation concludes? 

Evidence will be gathered over the course of the in-service evaluation. Some important questions remain under review, including how well the test works in practice, how quickly babies can be referred into care and whether screening is effective to introduce. 

The evidence will be assessed and a decision made by the UK NSC on whether SMA screening should continue to be offered as part of the newborn bloodspot programme. 

2.6 Will every baby be offered this test? 

During the in-service evaluation, screening for SMA will be introduced in a phased way. Once the roll-out across the country is completed, all babies born in England will be offered SMA screening. Until then, screening for SMA will only be available in the areas where the evaluation has started. 

2.7 Are other parts of the UK doing anything different? 

SMA screening is already offered to all babies in Scotland as part of an evaluation to inform future UK screening policies. Wales and Northern Ireland have not yet started an in-service evaluation for SMA. 

2.8 Do I need to do anything? 

No. Once the programme is running in your area, the test will be offered to you as part of your baby’s standard newborn care. 

2.9 Can I opt out of SMA screening for my baby? 

Yes, you can choose to opt out, but we would recommend that your baby has SMA screening. If you decide to opt out, your baby can still have the routine newborn blood spot screening for the other conditions. Opting out will not impact any of the care provided to you or your baby. 

2.10 What happens if it’s not available in my area? Can I go elsewhere? 

No. Screening for SMA is based on the location where your baby’s newborn blood spot sample is tested. If it’s not yet available in your area, and you have concerns about your baby’s development, speak to your health visitor or GP.  

Signs of SMA can include weak muscle tone, difficulty holding up the head, feeding difficulties or breathing problems, particularly in a baby’s first months of life. 

Some parents may choose to seek a private test for SMA if screening isn’t available. There are some important things to consider before you get a private test. You should read the information from SMA UK on what to do if you are not offered screening for SMA for your newborn baby first. 

2.11 Why is it only available in parts of the country? 

A phased implementation is part of the SMA in-service evaluation study design, as set out by the National Institute for Health and Care Research (NIHR), to provide the UK NSC with the evidence they require. As with all new screening programmes, it will take time for all laboratories across the country to prepare. Specialist equipment and staff training is required to ensure a quality and safe service.  

2.12 When will I get the result? 

The SMA result will be included with your baby’s other newborn blood spot test results, which you should receive before your baby is six weeks old. Most babies will get a negative result. This means the blood spot sample did not show the altered SMN1 gene, so the baby does not have SMA. 

2.13 What happens if the test shows my baby has SMA? 

Your baby will be referred quickly to a specialist team, who will confirm the diagnosis and discuss treatment options with you. You should not ignore any attempts to contact you by telephone. 

3. About treatments for SMA

3.1 What treatment for SMA is available on the NHS? 

Several treatments are approved by the National Institute for Health and Care Excellence (NICE). These treatments cannot reverse existing nerve damage, but they can prevent further damage if given early enough, particularly before symptoms appear.  

3.2 Where can I find out more about SMA? 

You can speak to your midwife or health visitor for more information on SMA.  

Information on the SMA in-service evaluation is available in Screening tests for you and your baby. 

In addition, information and support for families affected by the condition can be found on NHS.UK, SMA UK and Muscular Dystrophy UK.