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Empowering Adolescents and Young Adults With Sickle Cell Disease as Partners in Treatment Decision Making (EMPOWER-AYA)

Join a study on sickle cell treatment decision-making for young people.

Recruiting
15 years and older
All
Phase N/A
**Empowering Adolescents and Young Adults With Sickle Cell Disease (SCD) in Treatment Decisions** This study aims to help young people with Sickle Cell Disease (SCD) make better treatment choices. SCD is a condition where red blood cells, which carry oxygen, become sickle-shaped and can block blood flow, causing pain and other problems. The study will test a shared decision-making program for young people aged 15-25, their caregivers, and doctors. It will involve 60 young people and their caregivers from three hospitals: Nemours Children's Hospital in Delaware, Nemours Children's Hospital in Orlando, and Nemours Children's Health in Jacksonville, Florida. The program will include either virtual reality (a computer-generated environment) or standard educational materials like printed guides or videos.
  • Participants must be 15-25 years old, speak English, and be receiving SCD treatment at the mentioned hospitals.
  • The study involves using decision aids during clinic visits.
  • People who have already tested the program or have certain health issues won't be able to join.
Study details
    Sickle Cell Disease

NCT05383911

Nemours Children's Clinic

17 April 2026

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