The Experience of Screening for SCID

This project will evaluate the impact of including Severe Combined Immunodeficiency into the newborn bloodspot screening panel. It will recruit parents and health professionals primarily from the sites where this new form of screening is being trialled well as additional sites where clinicians will be involved in the care of these babies and comparator groups are needed.The proposed work will consist of two work packages. The first, a mixed-methods study conducted with families from the point of screening information being returned through to the child's fifth birthday. The second, a qualitative interview study conducted with health professionals during the clinical evaluation phase of the national pilot programme.

Inclusion Criteria:Participants must be at least 18 years of age. Participants must be able to understand the purpose and implications of the research study.Where participants are speakers of languages other than English, the research team will arrange a translator.Exclusion Criteria:Where a child dies after recruitment to the project the team will sensitively check whether the parents wish to continue participation to enable their views to be included.