Screening consultation on rare but serious condition in babies launched

A consultation has been launched by the UK’s independent expert screening committee on whether screening for Severe Combined Immune Deficiency (SCID) in babies should be tried within the NHS.

SCID is a rare inherited condition which makes it difficult for babies to fight off infections. An infection can be life-threatening for babies with SCID, with around 15 to 25 babies born with the condition every year.

The consultation will provide valuable information about whether SCID should be added to the existing NHS newborn blood spot screening programme, which currently checks for nine rare but serious health conditions. It will run until early November.

Screening for the condition would use blood from the current heel prick test to check if a baby has a low white blood cell count, which may make them more likely to have infections.

Before a decision can be made, more needs to be known about whether screening will save lives, the number of healthy babies found to have low numbers of white blood cells, and what care and treatment is best for babies who are found to have low numbers of white blood cels for reasons other than SCID.

As part of a regular review process all of the recommendations will be looked at again in three years, or earlier if new evidence becomes available.

All recommendations will now be considered by ministers.

Annie Mackie, director of programmes for the UK National Screening Committee (UK NSC), said: “We currently test babies for 9 rare but serious health conditions as part of the NHS newborn blood spot screening programme. This consultation will consider key organisations’ and the public’s views on how testing for SCID would work practically within the NHS. We need this information before the Screening Committee can make a recommendation on including SCID as part of the newborn programme.”