Rare disease ethics: what do patients and doctors really think?
NCT ID NCT07314736
First seen Jan 04, 2026 · Last updated Jun 22, 2026 · Updated 26 times
Summary
This study gathers opinions from patients, families, healthcare providers, and researchers about the ethical challenges of small-scale, personalized treatments for rare neurological diseases. Researchers will interview 385 participants to identify key concerns and best practices. The goal is to develop a framework that guides future ethical research in this area.
Disclaimer
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This is a summary of
the original study
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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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Contacts and locations
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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
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 create a best-practice framework for ethically conducting personalized treatments for children with rare neurological diseases.
What could go wrong
This is an observational interview study, not a treatment trial. It may not lead to immediate medical breakthroughs, and the framework developed may not be universally accepted.
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.