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

NCT06293222 | Active Not Recruiting

• 1 other identifier: SCD Support
• Study Type: observational
• Target: 20
• Locations: 1 country
• Sites: 1

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) 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

Conditions

Sickle Cell Disease

Outcome Measures

Primary Outcomes (1)

• Workshops with participants to develop resources that enable children and young people with sickle cell disorder and their families to engage in research

  Resources that enable children and young people with sickle cell disorder and their families to engage in research

  8 months

Study Arms (3)

Participants with personal experience of sickle cell disorder.

Participants with personal experience of sickle cell disorder (parents, affected children or siblings).

Researchers

Researchers working with children with life limiting or life changing conditions

Members of a patient advocacy organisation

Members of a patient advocacy organisation (Sickle Cell Society)

Eligibility Criteria

• Age: 10 Years+
• Sex: all
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

* Group A: Members of a patient advocacy organisation (Sickle Cell Society n=5) * Group B: i) Children and young people (10-18 years) with sickle cell disorder (n=15) ii) their siblings (10-18 years, n=10) iii) their parents (n=15) * Group C: Researchers working with children with life-limiting or life changing conditions

You may qualify if:

• Group A: Members of a patient advocacy organisation (Sickle Cell Society n=5)
• Group B:
• i) Children and young people (10-18 years) with sickle cell disorder (n=15) ii) their siblings (10-18 years, n=10) iii) their parents (n=15)
• Group C: Researchers working with children with life-limiting or life changing conditions

You may not qualify if:

• Group A: Members of patient advocacy organisations other than the Sickle Cell Society
• Group B:
• i) Children and young people younger than ten years or older than 18 years and those without sickle cell disorder (n=15) ii) siblings younger than ten years or older than 18 years and without a brother or sister with sickle cell disorder iii) parents of children with conditions other than sickle cell disorder
• Group C: Researchers who do not have experience working with children with life-limiting or life changing conditions

Sponsors & Collaborators

• King's College London: lead
• Sickle Cell Society: collaborator

Study Sites (1)

King's College London

London, SE5 9RS, United Kingdom

Location

Related Publications (1)

• Chudleigh J, Follett A, Mcfarlane-Griffith E, Abuo D, Josh, Imani, Holder P. Exploring How Children and Young People With Sickle Cell Disease and Their Families Want to be Involved in Research: A Qualitative Study. Health Expect. 2025 Apr;28(2):e70242. doi: 10.1111/hex.70242.

  PMID: 40152512 DERIVED

MeSH Terms

Conditions

Anemia, Sickle Cell

Condition Hierarchy (Ancestors)

Anemia, Hemolytic, Congenital; Anemia, Hemolytic; Anemia; Hematologic Diseases; Hemic and Lymphatic Diseases; Hemoglobinopathies; Genetic Diseases, Inborn; Congenital, Hereditary, and Neonatal Diseases and Abnormalities

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: February 27, 2024
• First Posted: March 5, 2024
• Study Start: August 21, 2023
• Primary Completion: April 30, 2024
• Study Completion: April 30, 2024
• Last Updated: March 7, 2024

Record last verified: 2024-03

Locations

GB (1)