There is new parent and carer information on SCID which should be provided alongside Screening tests for you and your baby in SCID screening areas. We have sought the views of professionals and public, and made lots of changes with their help.Ī big thank you again to everyone who volunteered their time to help make these resources useful and informative. It has been a thorough process involving careful research and development. We’ve launched new resources to support parents and healthcare professionals during the SCID evaluation. does not have any condition and can be discharged.has another condition affecting the immune system.Diagnostic tests will indicate if the baby: Midwives will tell parents and carers if screening for SCID is being offered in their area.īabies with a higher chance screening result for SCID will be referred promptly to regional immunology services for diagnostic tests. Great Ormond Street Hospital (GOSH), London.The areas included in the evaluation are those that send their newborn blood spot samples to laboratories in: In areas taking part in the evaluation, screening for SCID will be offered alongside the 9 other newborn blood spot conditions using the same blood spot sample. This can mean they are exposed to potentially fatal infections for longer before starting treatment.Įarly diagnosis also means treatment for SCID (a bone marrow transplant) is more likely to be successful and the baby spends less time being ill, or in hospital having tests. The remainder are usually diagnosed when they become ill. About a third of these babies are diagnosed because another member of their family has SCID. Without treatment, babies with SCID usually die before they reach a year of age.Ībout 1 in 40,000 babies born in England has SCID (about 14 babies a year). SCID is a group of rare conditions that affect the immune system and make it very hard for a baby to fight off common infections. I would like to say a special thank you to Rebecca Nightingale for sharing her story with us.Īnd I would urge you to take a moment to watch Rebecca’s short video about the devastating effects this condition can have on families, and why this evaluation is so important.
This has been a massive piece of work involving and relying on a huge range of people and organisations, without which it would simply not be possible. There are too many people and organisations to thank individually here. Planning for the SCID evaluation has been complex and has involved NHS colleagues, commissioners and providers. The UK NSC will then make a definitive recommendation about whether newborn screening for SCID should become part of the NHS Newborn Blood Spot (NBS) Screening Programme in England. Screening will continue for a third year while the results from the evaluation are analysed. The evaluation will initially run for 2 years, covering around two-thirds of the newborn population of England. Public Health England (PHE), the UK National Screening Committee (UK NSC) and NHS England and NHS Improvement (NHSEI) today (6 September 2021) launch an evaluation of newborn blood spot screening for severe combined immunodeficiency (SCID) in England.Īn evaluation will determine if screening for SCID will work as well in England as it has in other countries, with different populations and healthcare systems.
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