Spinal muscular atrophy and newborn screening

The petition Review the evidence and fund the addition of SMA to the Newborn Screening Test is being debated in Westminster Hall on 22 June 2026. The petition calls on the government to fund and fast-track the process of adding spinal muscular atrophy (SMA) to the NHS newborn heel-prick screening test.

The petition began on 9 February 2026 and will close on 9 August 2026. As of 19 June 2026, it had received 149,737 signatures.

The government responded on 4 March 2026 and said that the NHS was planning an evaluation that would offer SMA screening to newborn babies in England, and that this evaluation would inform a decision on whether it should be included in the newborn screening programme.

What is spinal muscular atrophy?

Spinal muscular atrophy (SMA) is a rare genetic condition that can cause the nerves in the spinal cord to deteriorate. Over time, this leads to muscle weakness, affecting the ability to move, breathe and swallow.

There are four main types of SMA, based on the age at which symptoms begin, and other rarer forms of the condition.

The charity Spinal Muscular Atrophy UK has estimated that around 47 babies with SMA are born each year in the UK. Of these, around 28 (60%) have the most severe SMA type 1. However, the charity also reports that data from its SMA Research and Clinical Hub database suggests that around 85 babies with SMA are born each year in the UK.

There is no cure for SMA, but there are some medicines that can help to improve its symptoms. Individuals with SMA are affected by the condition differently, but might also need support like physiotherapy, mobility equipment, help with breathing and swallowing problems, and a back brace or surgery to help with spine problems.

What is the newborn screening programme?

The NHS newborn blood spot (NBS) screening programme, also known as the heel-prick test, uses a small blood sample to test for 10 rare genetic diseases. It is offered to all newborn babies in the UK when they are five days old.

The UK National Screening Committee (UK NSC) advises the government about health screening programmes for the UK. The committee makes recommendations about which conditions should be included in programmes like the NBS.

The POSTnote Diagnosis and treatment of rare genetic diseases (March 2026) provides more information about the NHS NBS and SMA.

Newborn screening for SMA

Currently, the UK NSC does not recommend screening for SMA. The committee last reviewed this decision in October 2018. It explained that screening was not recommended because of a lack of evidence for the effectiveness of screening and for the treatment and care of people with SMA.

In June 2023, the UK NSC agreed to review its recommendations about SMA and said that this review process should include:

• developing new cost-effectiveness modelling for SMA screening in the UK
• planning an “in-service evaluation” (ISE) for SMA screening in NHS services, to find out how screening would work in practice.

In August 2025, the UK NSC published an update on its review, detailing the evidence it was considering. It reported that the new cost-effectiveness model showed that introducing newborn screening for SMA could lead to better outcomes and lower costs than the current situation. The model estimated that introducing SMA screening would:

• prevent two babies from requiring permanent ventilation (to support breathing) and three early deaths each year
• prevent about 30 babies being confined to sitting and enable 37 babies to live a largely normal life each year
• lead to three babies a year with SMA who would not have been affected until adulthood being diagnosed, which could ”harm their health and wellbeing".

The committee also concluded that an ISE to assess how screening would work in a real NHS setting was still required.

In-service evaluation (ISE) of SMA screening in England

In its response to the e-petition, the government said that the NHS was planning to offer SMA screening to newborns in England via the ISE.

In May 2026, the government announced that the ISE of newborn screening for SMA would begin in October 2026. It said that the evaluation would assess the feasibility, acceptability, effectiveness and cost-effectiveness of adding SMA to the NBS screening programme, and would inform a future UK NSC recommendation.

On 16 June 2026, the government acknowledged that the ISE would only cover part of the country, and said it had asked officials to determine if the ISE could be extended to cover all of England.

Screening for SMA in Scotland

In September 2025, the Scottish Government announced that it would begin national screening for SMA as part of a two-year research study, funded by the pharmaceutical company Novartis.

The Scottish Government says that the results of this research will complement and help contribute to the ISE taking place in England, and support a UK NSC recommendation about adding SMA to the NBS programme.

Further reading

POST, Diagnosis and treatment of rare genetic diseases (March 2026)

Spinal Muscular Atrophy UK