Please note that the URL for this site has changed to a 'phe.org.uk' address from 'nhs.uk'. This reflects changes we have made to hosting for this site.
 
Current UK NSC recommendations > Congenital adrenal hyperplasia

The UK NSC recommendation on Congenital adrenal hyperplasia screening in newborns

 
Recommendation Systematic population screening programme not recommended
Last review completed January 2016
Next review due in 2018/19
 
Key downloads
 

Find general information about population health screening.

Why is screening not recommended by UK NSC?

  • UK study data suggests around 40 babies are born each year with CAH in the UK. Some evidence suggests CAH is more common in people of an Asian background. More studies are needed to better understand which groups of people would be included in any future screening programme
  • studies suggest the current screening test (using 17-OHP immunoassay) incorrectly identifies a large number of babies as having CAH
  • studies also suggest the accuracy of this test was much poorer in babies born early and newborn babies with a low birth weight. This means that affected babies may be missed through screening
  • there was evidence that screening might not reduce the deaths related to CAH and takes place too late to benefit people with some types of CAH
UK study data suggests around 40 babies are born each year with CAH in the UK. Some evidence suggests CAH is more common in people of an Asian background. More studies are needed to better understand which groups of people would be included in any future screening programme
studies suggest the current screening test (using 17-OHP immunoassay) incorrectly identifies a large number of babies as having CAH
studies also suggest the accuracy of this test was much poorer in babies born early and newborn babies with a low birth weight. This means that affected babies may be missed through screening
there was evidence that screening might not reduce the deaths related to CAH and takes place too late to benefit people with some types of CAH

More about Congenital adrenal hyperplasia

Congenital Adrenal Hyperplasia is the name given to a group of enzyme disorders causing impaired production of cortisol (hydrocortisone) from the adrenal glands.

» Read more about congential adrenal hyperplasia on the Contact a Family website

Stakeholders

Children Living with Inherited Metabolic Diseases
Clinical Genetics Society
Genetic Alliance UK
MetBio
Rare Disease UK
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.

More options

Go to top