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NCT05383911 · ClinicalTrials.gov registry record · NA
Empowering Adolescents and Young Adults With Sickle Cell Disease as Partners in Treatment Decision Making (EMPOWER-AYA)
A NA study of Sickle Cell Disease, sponsored by Nemours Children's Clinic.
- Recruiting
- Registry status
- NA
- Development phase
- 68
- Enrollment target
- 1
- Study location
NCT05383911 is a NA study of Sickle Cell Disease that is actively recruiting participants, run by Nemours Children's Clinic. The registered enrollment target is 68 participants, below the 292-participant average among 213 other Sickle Cell Disease trials with a reported enrollment target (77% lower). The trial reports 1 study location across 1 state.
The verdict
NCT05383911, a NA study of Sickle Cell Disease, is actively recruiting participants, sponsored by Nemours Children's Clinic.
- RECRUITING
- Registry status
- NA
- Development phase
- 68 participants
- Enrollment target
- 1
- Study location
Study 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 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 Studied
Interventions
- BEHAVIORAL SCD Shared Decision-Making Toolkit for AYAs - including VR
- BEHAVIORAL SCD Shared Decision-Making Toolkit for AYAs - without VR
Study Locations (1)
Delaware
- Nemours Children's Hospital, Delaware - Wilmington
Trial Details
| Field | Value |
|---|---|
| Enrollment Target | 68 participants |
| Start Date | 2024-11-26 |
| Est. Completion | 2026-12-31 |
| Phase | NA |
Interested in This Trial?
Full Details on ClinicalTrials.gov ↗What the Registry Record Tells You About NCT05383911
The ClinicalTrials.gov registry entry for NCT05383911 describes a study currently listed as recruiting, categorized as NA. The registered enrollment target is 68 participants, a figure that helps gauge the scale of data the investigators plan to collect, below the 292-participant average among 213 other Sickle Cell Disease trials with a reported enrollment target (77% lower). The listed sponsor is Nemours Children's Clinic, which has 108 total studies on file at ClinicalTrials.gov.
The record links to 1 condition, with Sickle Cell Disease appearing as the primary indexed condition, and to 2 interventions - of which SCD Shared Decision-Making Toolkit for AYAs - including VR is the first listed.
NCT05383911 reports 1 study location spanning 1 distinct geographic area - top geographies include Delaware.
Frequently Asked Questions
What is clinical trial NCT05383911 about?
NCT05383911 is a clinical study titled "Empowering Adolescents and Young Adults With Sickle Cell Disease as Partners in Treatment Decision Making (EMPOWER-AYA)". 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 pragma...
What is the current status of trial NCT05383911?
This trial is currently recruiting. It is a NA study. The enrollment target is 68 participants. The study started on 2024-11-26. Estimated completion is 2026-12-31.
What conditions does trial NCT05383911 study?
This clinical trial studies the following conditions: Sickle Cell Disease.
What interventions are being tested in trial NCT05383911?
The interventions under investigation include: SCD Shared Decision-Making Toolkit for AYAs - including VR (BEHAVIORAL), SCD Shared Decision-Making Toolkit for AYAs - without VR (BEHAVIORAL).
Who is sponsoring clinical trial NCT05383911?
This trial is sponsored by Nemours Children's Clinic, which has 108 total clinical trials registered on ClinicalTrials.gov.
Where is trial NCT05383911 being conducted?
This trial has 1 study location across Delaware. Contact the study sites directly through ClinicalTrials.gov for enrollment availability.
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Related
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