Press release

Screening newborns for muscle wasting condition not recommended

The UK National Screening Committee (UK NSC) finds babies should not be screened for Duchenne muscular dystrophy.

Newborn baby in hospital

Newborn babies should not be screened for the muscle wasting condition Duchenne Muscular Dystrophy, according to the UK’s independent expert screening committee. The current test available for the condition incorrectly identifies some babies as having the condition and misses others who go on to develop the disease.

Duchenne muscular dystrophy is an inherited condition which causes muscles to weaken. This gets worse over time and leads to increasing levels of disability. It is caused by faults in the genes responsible for muscle development and mainly affects boys. The symptoms may be noticed when a child has difficulty standing up, climbing or running. Between 100 to 200 boys with the condition are born in the UK each year.

Dr Anne Mackie, Director of Programmes for the UK NSC, said:

This is a very serious condition but the current test is simply not reliable enough. Babies would be identified as having the condition when they don’t and the test also misses babies who go on to develop the disease.

The screening committee also recommended against screening for Haemochromatosis for adults. This is an inherited condition where iron levels in the body slowly build up over many years. This build-up of iron can cause unpleasant symptoms and can damage parts of the body such as the liver, joints, pancreas and heart.

Haemochromatosis is caused by a genetic fault. However, not everyone with the genetic fault experiences ill health. This means that screening would find people who would never have a problem, causing unnecessary worry and anxiety.

The 2 recommendations will now be considered by ministers.

As part of a regular review process these recommendations will be looked at again in 3 years – or earlier if significant new evidence becomes available.

The latest screening recommendations were made at the UK National Screening Committee’s meeting on 12 October 2016, the minutes of which are published today (Monday 28 November 2016).

This press release is issued on behalf of the UK National Screening Committee, an independent organisation, by Public Health England (PHE). For more information please call the PHE screening press office.

PHE screening press office

Background

  1. The UK National Screening Committee is independent of, but supported by, PHE.

  2. Detailed summaries of the current UK NSC recommendations for all of the conditions mentioned can be found.

  3. Public Health England exists to protect and improve the nation’s health and wellbeing, and reduce health inequalities. It does this through world-class science, knowledge and intelligence, advocacy, partnerships and the delivery of specialist public health services. PHE is an operationally autonomous executive agency of the Department of Health. Follow us on Twitter: @PHE_uk and Facebook: www.facebook.com/PublicHealthEngland.

Published 28 November 2016