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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: Recruiting NA study of Sickle Cell Disease, sponsored by Nemours Children's Clinic.
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. According to ClinicalTrials.gov, the official US trial registry.
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.
Primary Outcome
Questionnaire assessing healthcare provider perspectives on acceptability of the intervention. Total score ranges from 4-20, with higher scores indicating greater acceptability.
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 |
What NCT05383911 shows while recruiting
NCT05383911 is an interventional study that assigns participants to a tested intervention. The registry caps enrollment at 68 participants, a relatively small participant target, below the 292-participant average among 213 other Sickle Cell Disease trials with a reported enrollment target (77% lower).
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 a single indexed study location in 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.
Learn More About Clinical Trials
Similar trials for Sickle Cell Disease
Matched on the same primary condition, ranked to surface studies in the same phase first, then by recruiting status, no relevance scoring or editorial curation.
Where NCT05383911's enrollment target sits among peer trials
68 88th of 213 higher than 125 of 213 other Sickle Cell Disease trials
participants (enrollment target), bucketed by value
Each bar is a band; taller bars hold more other Sickle Cell Disease trials. The dashed line + filled bar mark this entry. Hover or tap any bar for its full count and share, and where it sits relative to this entry.
Source ClinicalTrials.gov registry export · 2026-08-08
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