The UK NSC recommendation on Galactosaemia 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 Nov 2019 and is estimated to be completed by Dec 2020.
Recommendation	Systematic population screening programme not recommended

Key downloads	Last external review - Evidence summary - consultation version - galactosaemia (2020) UK NSC coversheet and consultation responses

Find general information about population health screening.

Why is screening not recommended by UK NSC?

Screening for galactosaemia in newborns is not recommended. This is because:

screening and treatment do not prevent long term problems caused by the disease
screening would identify many babies who may never become ill
some babies would become ill before test results are available
current screening tests already identify some babies with the condition

More about Galactosaemia

Galactosaemia is a rare genetic condition. Babies born with it are unable to convert the sugar present in milk into glucose, the sugar used by the body. Symptoms include jaundice, failure to thrive, feeding difficulties and kidney disease.

Stakeholders

• ArchAngel MLD Trust
• British Association of Perinatal Medicine
• British Inherited Metabolic Disease Group
• Clinical Genetics Society
• Faculty of Public Health
• Galactosaemia Support Group
• Genetic Alliance UK
• Institute of Child Health
• Metabolic Support UK
• MetBio
• Royal College of General Practitioners
• Royal College of Midwives
• 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
• UK Newborn Screening Laboratories Network

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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