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.