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The UK NSC recommendation on Adrenoleukodystrophy (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 May 2020 and is estimated to be completed by Mar 2021.

Recommendation Systematic population screening programme not recommended
 
Key downloads
 

 

 

Find general information about population health screening.

Why is screening not recommended by UK NSC?

Newborn screening for ALD is not recommended. This is because:

  • the screening test is still in development
  • the test will identify babies with conditions other than ALD for which there are no treatments
  • the test will identify boys who will not develop the severe form (childhood cerebral ALD)
  • screening may not be able to tell the difference between boys who need treatment with bone marrow transplant, and boys who do not
  • there is uncertainty on the balance of long-term benefits and harms of treatment with bone marrow transplant

More about ALD

Adrenoleukodystrophy (ALD) is a rare inherited condition where certain fats cannot be broken down by the body. These fats build up and can affect the nervous system and the adrenal glands, which produce hormones.

Symptoms of ALD can include dizziness, visual and hearing problems, coordination difficulties, stiffness and weakness in the legs. It is not possible to tell how ALD will affect a person. Symptoms develop over time and can be different even within the same family.

ALD is more severe in males and can develop from childhood. Females who carry the faulty gene for ALD can develop symptoms in adulthood. 

ALD is a rare inherited condition where certain fats cannot be broken down by the body. These fats build up and can affect the nervous system and the adrenal glands, which produce hormones.

Symptoms of ALD can include dizziness, visual and hearing problems, coordination difficulties, stiffness and weakness in the legs. It is not possible to tell how ALD will affect a person. Symptoms develop over time and can be different even within the same family.

ALD is more severe in males and can develop from childhood. Females who carry the faulty gene for ALD can develop symptoms in adulthood.

Stakeholders

Alex - The Leukodystrophy Charity
British Association of Perinatal Medicine
British Inherited Metabolic Disease Group
Faculty of Public Health
Metabolic Support UK
Royal College of General Practitioners
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
Zellweger 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.

Related documents

icon Scoping review of newborn ALD (2017) (PDF document, 1.03MB, 07/10/20)

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