Patient and Public Involvement and Engagement in Research With Children and Young People With Sickle Cell Disorder and Their Families - Trial NCT06293222
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Study Focus
Observational
Sponsor & Location
King's College London
Timeline & Enrollment
N/A
Aug 21, 2023
Apr 30, 2024
Primary Outcome
Workshops with participants to develop resources that enable children and young people with sickle cell disorder and their families to engage in research
Summary
Aim: To co-produce resources for inclusive and equitable Patient and Public Involvement and
 Engagement in research on life-limiting conditions, with children and young people with
 sickle cell disorder and their families.
 
 Methods: Workshops with a) members of a patient advocacy organisation (Sickle Cell Society
 n=5) b): i) Children and young people (10-18 years) with sickle cell disorder (n=15) and ii)
 their siblings (10-18 years, n=10) and iii) their parents (n=15), c) Researchers form the
 Cicely Saunders Institute Outputs: Resources that enable children and young people with
 sickle cell disorder and their families to engage in research
ICD-10 Classifications
Data Source
ClinicalTrials.gov
NCT06293222
Non-Device Trial