Status:
RECRUITING
Empowering Adolescents and Young Adults With Sickle Cell Disease as Partners in Treatment Decision Making (EMPOWER-AYA)
Lead Sponsor:
Nemours Children's Clinic
Conditions:
Sickle Cell Disease
Eligibility:
All Genders
15+ years
Phase:
NA
Brief Summary
This study will evaluate the acceptability, feasibility, and preliminary efficacy of a shared decision making intervention for adolescents and young adults (AYAs) with sickle cell disease (SCD). 60 AY...
Eligibility Criteria
Inclusion
- Patients diagnosed with SCD ages 15-25 years receiving treatment at Nemours and their caregivers will be included. Patients must be deemed candidates for initiation of one or more disease-modifying therapies by their SCD healthcare provider.
- Nemours SCD healthcare providers will also be included.
- English language fluency is a requirement for all participants.
Exclusion
- Patients/ caregivers who previously participated in usability testing of the intervention will be excluded.
- Patients will also be excluded if they have history of seizures, if their medical status or cognitive functioning preclude completion of interviews, or if no legal guardian is available to provide consent (for patients \< 18 years).
- Providers still completing training will be excluded.
Key Trial Info
Start Date :
November 26 2024
Trial Type :
INTERVENTIONAL
Allocation :
ESTIMATED
End Date :
December 31 2026
Estimated Enrollment :
68 Patients enrolled
Trial Details
Trial ID
NCT05383911
Start Date
November 26 2024
End Date
December 31 2026
Last Update
November 21 2025
Active Locations (1)
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1
Nemours Children's Hospital, Delaware
Wilmington, Delaware, United States, 19803