Questionnaire study for people with cystinosis in 4 languages
Part of Genetic & congenital, Hormones & metabolism clinical trials.
This study is testing a health-and-quality-of-life questionnaire for children and young adults with cystinosis. If you join, you may complete surveys and take part in interviews to help make the questions clearer and more useful.
Summary written for real people, not researchers, by Clin2.
Who can take part
- You are between ages 8 and 26 (or you are a younger child, if a parent is also able to join)
- You have a confirmed diagnosis of cystinosis
- You (and the parent/guardian) can understand and use German, English, French, or Spanish well enough for interviews and surveys
- A parent or legal guardian agrees, and you give your agreement if you are older than 8
- You do not have severe memory or thinking problems that would make interviews or questionnaires hard
- No other very serious illness that mainly controls everyday life
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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