Rare disease ethics: what do patients and doctors really think about personalized trials?
NCT ID NCT07314736
First seen Jun 24, 2026 · Last updated Jul 14, 2026 · Updated 3 times
Summary
This study interviews patients, families, healthcare providers, and researchers to learn their views on the ethical challenges of small-scale, personalized treatment trials for rare neurological diseases. About 385 participants will share their perspectives through semi-structured interviews. The goal is to develop a best-practice framework for conducting these trials ethically, focusing on informed consent, risk-benefit assessments, and fairness.
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 study could create a best-practice framework for conducting ethical personalized treatment trials for children with rare neurological diseases.
- What could go wrong
- This is an observational interview study, not a treatment trial. It will not directly test any therapy or improve any patient's condition.
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
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Study contacts
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Contact
Email: •••••@•••••
Locations
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St. Jude Children's Research Hospital
RECRUITINGMemphis, Tennessee, 38105, United States
Contact Email: •••••@•••••
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