The UK NSC recommendation on Spinal Muscular Atrophy (currently in consultation)


This recommendation is currently being reviewed as part of the UK NSC's regular review cycle of all policies.

The review process began in Dec 2016 and is estimated to be completed by Apr 2019.

» Download the expert review for SMA (PDF document, 2.04MB)

The UK NSC welcomes comments and feedback on the expert review during the consultation period that lasts from 13/06/2018 until 09/09/2018. Please send comments to us by e-mail using this feedback form.

Please note that all consultation submissions will be published on this page when the review is complete. Full details can be found in the confidentiality and disclosure section at the bottom of this page.

Recommendation Systematic population screening programme not recommended

Find general information about population health screening.

More about SMA

Spinal muscular atrophy (SMA) is a genetic disease that causes muscle weakness and a progressive loss of movement. There are four types of SMA that vary in terms of the age those sufferers develop symptoms and also the severity of the symptoms they can have. There is no cure but therapy and support are available to help manage the condition.

SMA causes the motor neurones in a certain area of the spinal cord to deteriorate. This can result in progressive muscle wasting and loss of ability to move parts of the body. SMA is rare, with an estimated 5,500 to 6,000 people with SMA at any one time in the UK.

>>Read more about SMA on NHS Choices


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
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 UK NSC Review of Carrier Screening for Spinal Muscular Atrophy (PDF document, 406KB, 19/12/13)

Confidentiality and disclosure

Information provided in response to this consultation, including personal information, may be subject to publication or release to other parties or to disclosure in accordance with the access to information regimes (these are primarily the Freedom of Information Act 2000, the Data Protection Act 1998, and the Environmental Information Regulations 2004). If you want information, including personal data that you provide to be treated as confidential, please be aware that, under the FOIA, there is a statutory Code of Practice with which public authorities must comply and which deals, amongst other things, with obligations of confidence.

In view of this it would be helpful if you could explain to us why you regard the information you have provided as confidential. If we receive a request for disclosure of the information we will take full account of your explanation, but we cannot give an assurance that confidentiality can be maintained in all circumstances. An automatic confidentiality disclaimer generated by your IT system will not, of itself, be regarded as binding on the UK National Screening Committee.

Any request for information to be treated in confidence will be taken into consideration in the publication of responses to the consultation. The UK National Screening Committee intends to publish all responses following the closure of the consultation period, however we will not publish responses from respondents who request that any of the information in their response, including personal data, should be handled in confidence. The UK National Screening Committee reserves the right not to publish or take into account any representations which are openly offensive or defamatory.

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