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

WHY IT MATTERS

This 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.

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.

NCT ID: NCT07314736 Status: RECRUITING Conditions: Rare Disorder, Disorder, Neurologic Enrollment: 385 Sponsor: St. Jude Children's Research Hospital Summary: The purpose of this research study is to learn more about the perspectives of key stakeholders-patients, families, healthcare providers, and researchers-on the ethical challenges of small-scale, personalized treatment trials for rare neurological diseases (RND).

YOU CAN ACT ON THIS

If you have a rare neurological disorder or are a caregiver, family member, healthcare provider, or researcher, you can enroll now at clinicaltrials.gov using NCT07314736 to share your perspective on ethical treatment trial design.