Call for comments on extending the real-world evaluation of screening for SCID in the UK

On August 7, 2025, the UK National Screening Committee (UK NSC), which advises ministers and the NHS in all four UK nations on matters related to population screening, launched a consultation on its proposed recommendation to continue the in-service evaluation (ISE) of newborn screening for severe combined immunodeficiency (SCID) in real-world NHS services.

SCID is a group of rare inherited disorders that result in low numbers of T-cell lymphocytes and prevent the body from fighting infection properly. There is a test that can be used to screen for SCID, which involves counting the numbers of a specific product in the blood, called T-cell receptor excision circles (TRECs). However, the TREC test does not only identify SCID; many other conditions that affect the immune system and result in very low levels of T-cells will also result in a positive TREC test. 

In 2017, UK NSC did not recommend introduction of SCID as part of the newborn blood spot (NBS) screening. However, the evidence was promising, and the UK NSC recommended an in-service evaluation (ISE) in real-world NHS settings to address uncertainties, which was launched in September 2021. 

The latest evidence on screening for SCID was discussed by UK NSC members at their June 2025 meeting, including the following: 

• NHS England’s findings from the ISE during the 30-month evaluation period up to March 2024. It was concluded SCID screening cannot be recommended as a standalone programme, as it is not cost-effective. Screening for SCID should continue in the ISE areas as it is;
• External evidence review concluded that the current published evidence base is not adequate to fully support the implementation of NBS screening for SCID. Further work is needed to explore how screening should be handled to identify non-SCID T-cell lymphopenia conditions;
• UK NSC evidence summary, providing recommendations to continue ISE for SCID.

The UK NSC is inviting stakeholder organizations and public to provide feedback on the consultation evidence documents and the recommendation to continue ISE. The consultation will remain open until October 27, 2025.

See the full details here.

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