The information gained from this evaluation will inform a final recommendation on whether screening for SCID should become part of the newborn blood spot screening programme.
SCID makes it very hard to fight off common infections like pneumonia and meningitis. You may have heard of babies with SCID having to live in a ‘bubble’ to avoid infections. Without treatment these babies rarely survive past the age of one.
Currently 30% of babies with SCID are identified via family history. The delay in finding the remaining 70% means that they have been exposed to infection for longer before receiving treatment.
Screening would help to find and treat babies with SCID earlier.
Evaluation start date
Screening laboratories in 6 hospital trusts will take part in the evaluation to see if SCID screening should be offered across England. These trusts will be Great Ormond Street Hospital in London, South East Thames, Sheffield, Birmingham, Manchester and Newcastle.
We anticipate that more than 800,000 newborn babies will be offered screening over the 2 years the evaluation is taking place. The results of the evaluation will be gathered and analysed over this period.
The funding has now been awarded and the evaluation is due to start in September 2020.
We have set up a SCID project board and various working groups to plan the evaluation, and there have been lots of things to consider.
Parent information sheet
A good deal of work has gone into creating a new parent leaflet. Families being offered a test for this new condition need to have the right information so they can make an informed choice for their baby.
Developing information is not easy and we make sure it is designed with our audience in mind and do not make incorrect assumptions about what they need to know.
We ran 2 focus groups to get the views of new parents on our first draft. These sessions were fascinating and definitely gave us lots to think about!
Overall, both groups thought the draft was a good start and mostly clear, but there were certainly sections they were less keen on, and we’ve already made changes.
Many felt our sheet should be more visual with a clearer photograph showing the blood spot test. Both groups were keen we look at ways of showing some of the numerical information as a graph or image rather than bombarding them with numbers!
Again, this is something we’ve been working on and we do believe the latest version is an improvement on the initial draft. Hopefully when you see our information sheets you’ll agree they are attractive to look at and explain the screening offer clearly.
Work is under way to create new professional information for nurses and midwives who will eventually be making the offer to families. The new professional information we’re producing will help health professionals to:
- understand what SCID is
- know which maternity units are offering the new screen
- know what the common treatments for SCID are
- understand what SCID information and support is available for parents
Please keep an eye out for future blog posts under the ‘SCID’ tag and under the link to newborn blood spot articles.
PHE Screening blogs provide up to date news from all NHS screening programmes. You can register to receive updates direct to your inbox, so there’s no need to keep checking for new blogs. If you have any questions about this blog article, or about population screening in England, please contact the PHE screening helpdesk.