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

WHY IT MATTERS

This 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.

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.

NCT ID: NCT07314736 Title: Stakeholders of Rare Diseases Informing Values In Neuroethics Status: RECRUITING Sponsor: St. Jude Children's Research Hospital Start date: 2026-04-01 URL: https://clinicaltrials.gov/study/NCT07314736 Source: UniteRare clinical trials database