Status: Recruiting
Stakeholders of Rare Diseases Informing Values In Neuroethics
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).
Participants needed: 385
Trial details
Biological sex: AllType: ObservationalSponsor: St. Jude Children's Research HospitalUpdated: Jul 13, 2026Locations: 1
Eligibility criteria
Parental/primary caregiver with a child who has a genetic diagnosis of an ultrar... [+11]
Limited English proficiency [+3]