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Current UK NSC recommendations > Duchenne muscular dystrophy

The UK NSC recommendation on Duchenne muscular dystrophy screening in newborns

 
Recommendation Systematic population screening programme not recommended
Last review completed November 2016
Next review due in 2019/20
 
Key downloads
 

Find general information about population health screening.

Why is screening not recommended by UK NSC?

Newborn screening for DMD is not recommended because of concerns about: -

  • The reliability of the current test.
  • While there is evidence of benefit from long term steroid treatment, the optimum age at which it should be initiated remains the subject of uncertainty.
  • There is insufficient evidence that identifying DMD in the newborn through screening improves long term outcomes in comparison to current practice.
  • The evidence regarding the impact of early diagnosis on parents' subsequent reproductive decision making is conflicting.

More about Duchenne muscular dystrophy

The muscular dystrophies are a group of disorders, caused by a genetic abnormality, that cause progressive weakness. Although genetic in origin, there are various reasons why an affected individual might have no family history of a similar condition. Some are severe and limit life expectancy, others relatively mild.

Stakeholders

Action Duchenne
Children Living with Inherited Metabolic Diseases
Duchenne Family Support Group
Faculty of Public Health
Genetic Alliance UK
Institute of Child Health
Muscular Dystrophy Campaign
Royal College of General Practitioners
Royal College of Midwives
Royal College of Paediatrics and Child Health
Save Babies Through Screening Foundation 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.

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