The UK NSC recommendation on Spinal Muscular Atrophy

 
Recommendation Systematic population screening programme not recommended
Last review completed October 2018
Next review due in 2021/22
 
Key downloads
 

Find general information about population health screening.

Why is screening not recommended by UK NSC?

Screening for SMA is not recommended by the UK NSC. This is because:
  • there is not evidence to show how effective a screening programme would be
  • the best way to support people who receive positive results is not known
  • there is no evidence for effective treatments for people who do not show symptoms of SMA
  • the long term effects of a new treatment called nusinersen which can improve symptoms in children with SMA are unknown
  • there is no evidence on the effectiveness of nusinersen in children without symptoms
  • the evidence on how well the test for SMA performs is limited
  • there is not enough information about the total number of people affected by SMA

More about SMA

Spinal muscular atrophy (SMA) is a genetic disease. It causes muscle weakness and a progressive loss of movement. There is no cure but therapy and support are available to help manage the condition.

>>Read more about SMA on NHS UK

Stakeholders

The British Society for Human Genetics
Faculty of Public Health
Muscular Dystrophy Campaign
Royal College of General Practitioners
Royal College of Paediatrics and Child Health
Royal College of Physicians
Royal College of Physicians and Surgeons of Glasgow
Royal College of Physicians of Edinburgh
Scottish Muscle Network
SMA Trust
Spinal Muscular Atrophy Support UK

The stakeholder groups will be involved when the recommendation is next reviewed. If you think your organisation should be added, please contact us. More information for stakeholders can be found in appendix C of the UK NSC evidence review process.

Related documents

icon Evidence summary- SMA (2012) (PDF document, 406KB, 11/12/19)

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