Plain-English translation of NCT05383911 on ClinicalTrials.gov ↗ · Source last updated · Translation generated · How we translate trials
Read our Sickle Cell Disease research guide →This study doesn't follow the usual testing phases — it may be an observational study or a different type of research.
This study is testing a new shared decision-making program designed to help teens and young adults with sickle cell disease (ages 15–25) feel more involved and informed when choosing disease-modifying treatments. The program includes educational materials and toolkits that help you and your healthcare team talk through your treatment options together. Some participants will use virtual reality education, while others will use printed and video materials.
Young people with sickle cell disease often don't feel included in decisions about their treatment. This program aims to give teens and young adults a stronger voice in choosing therapies that work best for them, alongside their doctors and families.
You likely qualify if…
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You and your caregiver will meet with your sickle cell care team during an outpatient clinic visit, where doctors will introduce a decision-making toolkit tailored to your treatment options. Depending on which Nemours location you attend, you may use virtual reality educational materials or standard print and video resources to learn about your choices. You'll be asked to share your thoughts through interviews so the research team can understand whether this approach helps you feel more involved in decisions about your care.
AI-generated summary from trial data · Jun 23, 2026 · Not medical advice
United States