Actively Recruiting
Empowering Adolescents and Young Adults With Sickle Cell Disease as Partners in Treatment Decision Making (EMPOWER-AYA)
Led by Nemours Children's Clinic · Updated on 2026-04-22
68
Participants Needed
1
Research Sites
109 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
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 AYAs with SCD ages 15-25 and their caregivers and 8 SCD providers will participate in the pilot pragmatic trial. AYAs, caregivers, and providers will be recruited from Nemours Children's Hospital, Delaware (NCH-DE), Nemours Children's Hospital in Orlando, FL (NCH-ORL), and Nemours Children's Health at Wolfson Children's Hospital in Jacksonville, FL (NCH-JAX). NCH-DE participants (n=30) will receive the SDM intervention including a virtual reality patient health education component, whereas NCH-ORL and NCH-JAX participants (n=30) will receive the SDM intervention with standard patient education materials (print, video). SCD providers will be trained to use the toolkit components and will introduce decision aids during an outpatient clinic visit for AYAs who are candidates for one or more disease-modifying therapies.
CONDITIONS
Official Title
Empowering Adolescents and Young Adults With Sickle Cell Disease as Partners in Treatment Decision Making (EMPOWER-AYA)
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Patients diagnosed with sickle cell disease aged 15 to 25 years receiving treatment at Nemours and deemed candidates for disease-modifying therapies
- Caregivers of eligible patients
- Nemours sickle cell disease healthcare providers
- Fluency in English for all participants
You will not qualify if you...
- Previous participation in usability testing of the intervention
- History of seizures
- Medical status or cognitive function preventing completion of interviews
- No legal guardian available for consent if patient is under 18 years old
- Providers still completing training
AI-Screening
AI-Powered Screening
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Trial Site Locations
Total: 1 location
1
Nemours Children's Hospital, Delaware
Wilmington, Delaware, United States, 19803
Actively Recruiting
Research Team
C
Clinical Research Coordinator
CONTACT
How is the study designed?
Study Type
INTERVENTIONAL
Masking
NONE
Allocation
NON_RANDOMIZED
Model
PARALLEL
Primary Purpose
SUPPORTIVE_CARE
Number of Arms
2
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