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Gene Therapy Communication: Use of a Needs Assessment to Drive Decision-AIDS for Gene Therapy for Rare Diseases (GENETX)

A study is exploring gene therapy options for rare diseases.

Recruiting
8 years and older
All
Phase N/A
  • Simplified description (AI rewritten)
  • Technical description (Original)

This study is about understanding how people feel and what they know about gene therapy for rare diseases. Gene therapy is a new type of treatment that tries to fix or replace broken genes in our bodies. The study will talk to patients, parents, and healthcare workers to find out their thoughts and worries. With this information, an online platform will be created to help families learn more and make better decisions about these treatments.

  • Participants will join a one-on-one interview through video calls.
  • This study will help create educational resources for families considering gene therapy.
  • Interviews will need internet access and a computer or mobile device.
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Study details
    Sickle Cell Disease

NCT05810181

St. Jude Children's Research Hospital

5 September 2026

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What is a clinical trial?

A clinical trial is a study designed to test specific interventions or treatments' effectiveness and safety, paving the way for new, innovative healthcare solutions.

Why should I take part in a clinical trial?

Participating in a clinical trial provides early access to potentially effective treatments and directly contributes to the healthcare advancements that benefit us all.

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The duration of clinical trials varies. Some trials last weeks, some years, depending on the phase and intention of the trial.

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Compensation varies per trial. Some offer payment or reimbursement for time and travel, while others may not.

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Clinical trials follow strict ethical guidelines and protocols to safeguard participants' health. They are closely monitored and safety reviewed regularly.
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