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Stakeholders of Rare Diseases Informing Values In Neuroethics

StatusRecruiting
PhaseNot specified
Started
View on ClinicalTrials.gov ↗

Record History

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  1. Start date changed from estimate of Jul 2026 to Jul 8, 2026v8
  2. Start date: Jun 2026 to Jul 2026v7
  3. Start date: May 2026 to Jun 2026
    • Site contact updated
    v6
  4. Start date: Apr 2026 to May 2026v5
  5. Start date: Mar 2026 to Apr 2026v4
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  1. Trial status: Not Yet Recruiting to Recruiting
    • Site details revised
    • Eligibility criteria shortened, about 1 word
    v3
  2. Start date: Jan 2026 to Mar 2026v2
  1. Study First Submitted
  • Stopped: an ongoing trial was terminated, suspended or withdrawn.
  • Notable: the trial’s plan changed such as a big move in its timeline or size, a new primary endpoint, sponsor or phase, or recruiting opened or resumed.
  • Minor: routine progress and housekeeping, such as sites added or enrollment closed.
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).
Trial Details
NCT Number NCT07314736
Lead Sponsor St. Jude Children's Research Hospital
Conditions
(from sponsor)		 Rare Disorder, Disorder, Neurologic
Related terms Nervous System Diseases, Rare Diseases
Enrollment 385 participants
Start Date
Primary Completion (estimated)
Study Completion (estimated)
Updated on ClinicalTrials.gov