The Experience of Screening for SCID

Launched by KING'S COLLEGE LONDON · Dec 6, 2022

Keywords

ClinConnect Summary

This clinical trial, titled "The Experience of Screening for SCID," is looking at how screening newborns for Severe Combined Immunodeficiency (SCID) affects families and healthcare providers. SCID is a serious condition that makes it hard for babies to fight off infections. The trial will gather insights from parents and health professionals at various hospitals where this new screening method is being tested. It will involve two main parts: one part will explore families' experiences from when they receive screening information until their child turns five, and the other part will involve interviews with health professionals about their experiences during the pilot program.

To participate in this trial, individuals must be at least 18 years old and able to understand the research's purpose. If a participant speaks a language other than English, a translator will be provided. The trial is actively recruiting participants, and it’s important to note that if a child passes away after joining the study, the research team will check with the parents to see if they still want to share their experiences. This study aims to better understand the impact of SCID screening on families and healthcare providers, which could help improve care for affected children in the future.

Gender

ALL

Eligibility criteria

• 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.