SCID general study

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The NHS newborn blood spot (NBS) screening in-service evaluation for SCID screens approximately two thirds of babies in England. It was agreed that it was best to delay BCG vaccination until the outcome of SCID screening was known. Babies will usually be vaccinated at or before 28 days of age.

https://www.gov.uk/government/collections/bcg-vaccination-programme
https://assets.publishing.service.gov.uk/media/61b09c0be90e07043d677e98/UKHSA-12101-BCG-patient-flowchart_Dec21.pdf

The Generation Study has begun recruiting in some areas of England https://www.genomicsengland.co.uk/initiatives/newborns/how-we-work. This research study will map the whole genome and feedback results on 200+ conditions. Included within this are some immunological conditions such as SCID. It is expected that, initially, Generation study results would be available 28 days later, with the hope that it would move to 14 days in the future. This compares with 10-14 days for the SCID screening results. 

Some of the babies in the Generation Study will have been screened for SCID as part of the NHS NBS in-service evaluation. The Generation Study expects 1 or 2 cases of SCID to be identified in the 100,000 tested. There is an extremely small risk that a child eligible for BCG vaccine, would be found to have SCID as a part of the Generation Study, but was not in the SCID in-service evaluation.

The Joint Committee for Vaccination and Immunization (JCVI) has agreed that babies in the Generation Study who are not part of the SCID in-service evaluation should be offered BCG vaccine as per the current process. Having the result from the Generation Study is not a condition of having BCG vaccination. This means that BCG vaccination would not be delayed.

Please contact our team at england.londonimms@nhs.net with any queries.

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It is not for public use.

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