The UK NSC recommendation on Duchenne muscular dystrophy screening in newborns (currently under review)
This recommendation is currently being reviewed as part of the UK NSC's regular review cycle of all policies.
The review process began in Apr 2016 and is estimated to be completed by Nov 2016.
||Systematic population screening programme not recommended
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.
• 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
More information for stakeholders can be found in appendix C of the UK NSC evidence review process.
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