Clinical Trial: Patient and Public Involvement and Engagement in Research With Children and Young People With Sickle Cell Disorder and Their Families

U.S., March 5 -- ClinicalTrials.gov registry received information related to the study (NCT06293222) titled 'Patient and Public Involvement and Engagement in Research With Children and Young People With Sickle Cell Disorder and Their Families' on Feb. 27.

Brief 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) Res...