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Shared Decision-Making Toolkit for Sickle Cell Disease (EMPOWER-AYA Trial)

N/A

Recruiting

Research Sponsored by Nemours Children's Clinic

Eligibility Criteria Checklist

Specific guidelines that determine who can or cannot participate in a clinical trial

Must have

Must not have

Patients will also be excluded if they have a history of seizures, if their medical status or cognitive functioning precludes completion of interviews, or if no legal guardian is available to provide consent (for patients under 18 years).

Timeline

Screening 3 weeks

Treatment Varies

Follow Up time of enrollment through study completion, approximately 12 months

Awards & highlights

No Placebo-Only Group

Summary

This trial will test a new way for teens and young adults with sickle cell disease to make decisions about their treatment. 60 patients and their caregivers, as well as 8 healthcare providers, will

Who is the study for?

This trial is for adolescents and young adults aged 15-25 with sickle cell disease (SCD), along with their caregivers, who are fluent in English. Participants must be receiving treatment at Nemours or ChristianaCare and considered by their healthcare provider as candidates for new SCD treatments.

What is being tested?

The study tests a shared decision-making toolkit designed to help patients with SCD make informed choices about their treatment. Some will use the toolkit with virtual reality education, while others will have standard materials like print and video.

What are the potential side effects?

Since this trial focuses on decision-making tools rather than medications, there aren't direct side effects from drugs being tested. However, participants may experience discomfort or stress related to discussing medical decisions.

Eligibility Criteria

Exclusion Criteria

You may be eligible for the trial if you check “No” for criteria below:

Select...

I do not have a history of seizures, can complete interviews, and if under 18, have a guardian for consent.

Timeline

Screening ~ 3 weeks3 visits

Treatment ~ Varies

Follow Up ~ time of enrollment through study completion, approximately 12 months

Screening ~ 3 weeks

Treatment ~ Varies

Follow Up ~time of enrollment through study completion, approximately 12 months

This trial's timeline: 3 weeks for screening, Varies for treatment, and time of enrollment through study completion, approximately 12 months for reporting.