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Exploring Parents’ & Health Professionals’ Experiences of Screening for Severe Combined Immunodeficiency

Some countries have introduced newborn screening for Severe Combined Immunodeficiency (SCID) and modelling suggests it is probably cost effective in the UK setting. However, there is some uncertainty about this and questions remain unanswered relating to its potential introduction in the UK.

This project will evaluate the impact of including SCID into the newborn screening panel. It will recruit parents and health professionals primarily from the sites where this new form of screening is being trialled (Manchester, Sheffield, Newcastle, Birmingham, South-East and South-West Thames, & Great Ormond Street), as well as additional sites where clinicians will be involved in the care of these babies and comparator groups, are needed including Nottingham, Leicester and Liverpool.

The proposed work will consist of two work packages. The first was a mixed-methods study conducted with families from the point of screening information being returned through to the child’s fifth birthday. The second is a qualitative interview study conducted with health professionals during the clinical evaluation phase of the national pilot programme.  


Family Study

  • Explore effects on families whose babies received a positive SCID result
  • Compare the above views with families who received a false positive result
  • Compare the quality of life of children with SCID whose diagnosis was reached by screening, family history or symptomatic presentation
  • Measure quality of life of families of children with secondary or syndromic T cell lymphopenia
  • Measure quality of life and screening experience of children with idiopathic T cell lymphopenia compared with families of children diagnosed with CFSPID

Health Professional Study

  • Explore views of midwives, immunologists and clinical nurse specialists


SCID consists of two work packages. The first, a mixed-methods study, the second, a qualitative interview study.

Our Partners

Guy's and St Thomas'  logo

Guy's and St Thomas' NHS Foundation Trust

Project status: Ongoing

Principal Investigators



Funding Body: NHS England and NHS Improvement (NHSE/I)

Amount: £300,000

Period: November 2021 - March 2029