Study on values and ethics for ultra-rare diseases
Part of Brain & nervous system clinical trials.
This study aims to understand the perspectives of parents, caregivers, family members, and professionals involved with children who have ultra-rare genetic disorders. It uses interviews or focus groups to explore ethical and value-based questions.
Summary written for real people, not researchers, by Clin2.
Who can take part
- You are a parent or primary caregiver of a child (under 21) with a genetic or suspected genetic ultra-rare disorder, and you can speak English.
- You are a young adult patient (up to 25) with a genetic ultra-rare disorder, and you can speak English.
- You are a family member (like a sibling at least 13, or grandparent) who helps care for a child with an ultra-rare disorder and can speak English.
- You are a professional (like a doctor, nurse, advocate, or researcher) working with children who have rare genetic disorders, and you can speak English.
- You are willing to take part in a conversation (interview or focus group) and give your verbal agreement.
Quick eligibility check
Answer a few plain-language questions, based on this study's own requirements, to get a preliminary sense of fit.
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