Patient-centred sickle cell disease management in sub-Saharan Africa (PACTS)

Not Applicable

• Conditions: Patient-centred sickle cell disease management in sub-Saharan Africa; Haematological Disorders

• Registration Number: ISRCTN20156345
• Lead Sponsor: iverpool School of Tropical Medicine

Brief Summary

Not available

Detailed Description

Not available

Study Timeline

• Results First Posted: 1900-01-01
• Study Start: 2024-01-31
• Last Update Posted: 12 February 2024
• Study Completion: 2026-07-31

Recruitment & Eligibility

• Status: Ongoing
• Sex: All
• Target Recruitment: 1754

Inclusion Criteria

Adolescents living with sickle cell disease
1. Aged 15 and older
2. Parent/caregiver has provided informed consent
3. Adolescent has given assent to participate

Carers of people living with sickle cell disease
1. Aged 18 and older
2. Caring for at least one person with sickle cell disease

Sickle cell disease healthcare providers
1. Aged 18 and older
2. Playing a role in supporting clinical management of patients with sickle cell disease

Sickle cell disease decision-makers/stakeholders
1. Aged 18 and older
2. Playing a role: in policymaking/guideline development for sickle cell disease; resource allocation for sickle cell disease; clinical training for sickle cell disease
3. Working with community-based or non-governmental organisations that support people living with sickle cell disease and their families

Standards-Based Audit and Participatory Action Cycle leads
1. Members of the study team facilitating PAC and SBA activities

Exclusion Criteria

1. Any participant not consenting to participate. If an adolescent does not give assent, this will be prioritised, even if the parent/guardian has given consent.
2. Adolescent carers of someone living with sickle cell disease

Study & Design

• Study Type: Observational
• Study Design: Not specified