Family experiences in pediatric rare diseases
This study looks at how families adapt and relate when a child has a rare disease. It aims to understand family dynamics over time, which may help improve support for families in similar situations.
Summary written for real people, not researchers, by Clin2.
Who can take part
- Your child is 8 to 18 years old and has a rare disease listed in the study.
- You and your child speak German (or English for parents).
- Your child lives at home most of the time (at least 4 nights per week).
- At least one parent or guardian can sign consent; teens aged 14-17 also sign their own.
- Only one child in the family has a rare disease.
- Up to two caregivers (e.g., parents, stepparents living at home) can take part.
- Your child does not have a cognitive impairment.
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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