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2 articles matching "ethics"

ResearchUNITERAREApr 3

New Recruiting Trial: Stakeholders of Rare Diseases Informing Values In Neuroethics

This is a research study looking for patients and families affected by rare diseases to share their thoughts and values about brain and nerve-related medical decisions. Researchers at St. Jude Children's Research Hospital want to understand what matters most to people living with rare diseases so they can make better ethical decisions in medical research and treatment. The study is now accepting participants and will start in April 2026.

WHY IT MATTERSThis study gives rare disease patients and caregivers a direct voice in shaping how medical ethics and brain-related research decisions are made — your input could influence future treatment guidelines and research practices.
ℹ Good to knowRead →
ResearchCLINICALTRIALSMar 26

Trial Now Recruiting: Stakeholders of Rare Diseases Informing Values In Neuroethics (NCT07314736)

Researchers at St. Jude Children's Research Hospital are recruiting 385 people—including patients, families, doctors, and scientists—to share their thoughts about ethical questions that come up when testing new treatments for rare brain and nerve diseases. The study wants to understand what different groups of people think is fair and right when designing these small, personalized treatment trials.

WHY IT MATTERSThis study directly shapes how future rare neurological disease trials will be designed and conducted, meaning your input as a patient or caregiver could influence the ethical standards that protect you in future treatment studies.
→ You can act on thisrare neurological diseasesrare neurologic disordersRead →

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