Talking gene therapy: new study seeks family insights

NCT ID NCT05810181

Recruiting now Knowledge-focused Sponsor: St. Jude Children's Research Hospital Source: ClinicalTrials.gov ↗

First seen Jun 24, 2026 · Last updated Aug 11, 2026 · Updated 4 times

Summary

This study interviews patients and families who have experience with gene therapy for rare pediatric diseases, including sickle cell disease. Researchers want to understand their beliefs, attitudes, and what information they need. The goal is to create an online platform with educational content and decision aids to help future families. No treatment is given in this study.

What this could mean

Our plain-language read of the trial. This is informational only — not medical advice or a prediction.

What this could lead to: If successful, this could lead to better educational tools and decision aids for families considering gene therapy for rare diseases.
What could go wrong: This is an interview study, not a treatment trial. It may not directly improve health outcomes, and the tools developed may not suit all families.

This is an AI summary of the original study and may miss details. Read our disclaimer.

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Conditions

The condition(s) this trial relates to.

bone marrow failure syndrome sickle cell disease

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

SICKLE CELL DISEASE

Contacts and locations

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Study contacts

Contact

Email: •••••@•••••

Locations

St. Jude Children's Research Hospital
RECRUITING

Memphis, Tennessee, 38105, United States

Contact Email: •••••@•••••

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