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The UK NSC recommendation on Severe Combined Immunodeficiency

 
Recommendation Systematic population screening programme not recommended
Last review completed April 2013
Next review due in 2016/17
 
Key downloads
 

Following the first review of SCID, the UK NSC does not recommend screening outside of well designed evaluations to assess the impact of screening. 

 

The UK NSC are working with the NHS National Institute for Health Research (NIHR) to develop research to answer the outstanding questions from the first review of SCID against the criteria for screening.

 

Find general information about population health screening.

Why is screening not recommended by UK NSC?

The UK NSC does not recommend universal screening of SCID in newborns because at present there is insufficient information on the:

  • epidemiology of the condition in the UK
  • performance of the test
  • management and outcomes of babies who are detected by screening but do not have SCID and 
  • the clinical and cost effectiveness of screening compared to current practice.

More about SCID

Severe combined immunodeficiency (SCID) is a group of genetic disorders characterised by the absence of humoral and cellular immunity. Left untreated in childhood, it can be fatal due to the severe vulnerability to common and opportunistic infections.

The most common treatment for SCID is haematopoietic stem cell transplant (HSCT) derived from bone marrow donors.

A number of Questions and Answers have been written to help explain more about SCID.

Stakeholders

Ataxia Telangiectasia Society
British Paediatric Allergy, Immunology and Infection Group
British Society for Immunology
CGD Society
Children Living with Inherited Metabolic Diseases
Genetic Alliance UK
INGID - International Nursing Group for Immunodeficiencies
IPOPI - International Patient Organisation for Primary Immunodeficiencies
Royal College of Paediatrics and Child Health
Save Babies Through Screening Foundation UK
UK Primary Immune-deficiency Patient Support
UK Primary Immunodeficiency 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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