Clinical trial for Sickle Cell Disease
Official title Empowering Adolescents and Young Adults With Sickle Cell Disease as Partners in Treatment Decision Making (EMPOWER-AYA)
ClinicalTrials.gov ID: NCT05383911
What this study is testing
- What it's testing
- The study aims to see if a shared decision‑making intervention is acceptable, doable, and shows early signs of helping treatment choices for sickle cell patients.
- Who it's for
- Adolescents and young adults aged 15‑25 with sickle cell disease, along with their caregivers and the doctors who treat them.
- What's involved
- Participants will receive a decision‑making toolkit during a regular clinic visit; some will use a virtual‑reality education module, while others will get standard print or video materials. Doctors will be trained to use the toolkit and introduce decision aids.
A plain-language read of the study's public ClinicalTrials.gov listing. The study team confirms the details.
Who can take part
Ages 15 and older
You may be able to join if
- Patients diagnosed with SCD ages 15-25 years receiving treatment at Nemours and their caregivers will be included.
- Nemours SCD healthcare providers will also be included.
- English language fluency is a requirement for all participants.
You likely can't join if
- 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...
- Providers still completing training will be excluded.
The study team makes the final eligibility decision.
Where it is enrolling
- Wilmington, Delaware, United States
Questions & answers
Do participants get paid in this trial?
This listing doesn't specify compensation. Many trials still reimburse travel or offer a stipend, so it's worth asking the study team when you connect.
Is it free to join, and do I need insurance?
Searching and applying through BridgeMD is free. In clinical trials the study-related treatment and visits are generally provided at no cost to you. You usually don't need insurance to take part, but confirm specifics with the study team.
How long does this study last?
The listing doesn't state an exact length. The study team walks you through the schedule and number of visits before you decide to enroll.
Who can join this trial?
This study is enrolling all sexes, 15 years and older. The study team makes the final eligibility decision.
Where is this trial taking place?
This study is enrolling now at Wilmington, Delaware, United States. Enter your location above to see the nearest enrolling site and check your eligibility.
Explore other conditions
BridgeMD is an information and trial-matching tool that is independent of the study sponsor. Details come from ClinicalTrials.gov. The study team decides eligibility, and your own doctor gives medical advice.