What do patients and doctors think about personalized rare disease treatments?
NCT ID NCT07314736
First seen Jan 04, 2026 · Last updated Jun 04, 2026 · Updated 25 times
Summary
This study interviews patients, families, healthcare providers, and researchers to learn their views on the ethical issues of small-scale, personalized treatments for rare neurological diseases. About 385 participants will share their perspectives through interviews and surveys. The goal is to create a framework for conducting these treatments ethically and fairly.
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Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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St. Jude Children's Research Hospital
RECRUITINGMemphis, Tennessee, 38105, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact
Conditions
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