Families and rare diseases: a long-term study
Part of Genetic & congenital clinical trials.
This study looks at how families adapt and how relationships change over time when a child has a rare disease. It involves both the child and their parents completing questionnaires and possibly a smartphone app for a few days.
Summary written for real people, not researchers, by Clin2.
Who can take part
- Your child must have one of the rare diseases listed in Table 2 of the study.
- The child must be between 8 and 17 years old if they are participating.
- The child must speak German well enough to complete questionnaires.
- The child must live at home (sleep at home at least 4 nights a week).
- If you are a parent, you can speak either German or English.
- Only one child in the family can have a rare disease to participate.
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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