Severe Combined Immunodeficiency (SCID) Clinical Trials

Find Severe Combined Immunodeficiency (SCID) Clinical Trials Near You

Exploring Parents' and Health Professionals' Experiences of Screening for Severe Combined Immunodeficiency

Status: Recruiting
Location: See location...
Intervention Type: Other
Study Type: Observational
SUMMARY

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.

Eligibility
Participation Requirements
Sex: All
Minimum Age: 18
Healthy Volunteers: t
View:

• 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.

Locations
Other Locations
United Kingdom
King's College London
RECRUITING
London
Time Frame
Start Date: 2022-11-09
Estimated Completion Date: 2029-03-31
Participants
Target number of participants: 90
Treatments
Positive NBS for SCID
Parents whose baby was referred to an immunologist due their SCID screening result (minimum n= 10-25)
Normal NBS result
Parents who received a normal screening result (minimum n=10-25)
False positive NBS result
Parents who have received a false positive result elsewhere in screening (minimum n=2-10)
CFSPID Designation
Parents who received a CFSPID result (minimum n=\~10)
SCID via family history or clinical presentation
Parents whose baby was identified with SCID due to family history or clinical presentation (minimum n=10)
Parents whose babies have died
Parents who have received an abnormal screening result (T cell receptor excision circles (TRECs) or who were identified with SCID due to family history or clinical presentation and whose baby has subsequently died (n=\~10)
Sponsors
Collaborators: Coventry University, National Health Service, United Kingdom, University of Sheffield, University of Manchester
Leads: King's College London

This content was sourced from clinicaltrials.gov