Online registry for Wolfram syndrome worldwide
Part of Brain & nervous system, Ear, nose & throat, Eyes & vision, Genetic & congenital, Hormones & metabolism, Kidney & urinary, Women’s health & pregnancy clinical trials.
This study builds an international online registry to learn how Wolfram syndrome (and related WFS1 conditions) changes over time. It may help researchers understand the disease course and improve future care by collecting health and family history data.
Summary written for real people, not researchers, by Clin2.
Who can take part
- You have a diagnosis of Wolfram syndrome or a WFS1-related disorder
- You can access the internet and can join online
- You (or your child) have specific early symptoms, such as diabetes and/or optic nerve damage before age 16
- You meet at least 2 key criteria, or 1 key plus 2 additional criteria, or have certain WFS1/CISD2 gene results
- You and your guardian (if needed) can understand the consent forms and questionnaires in your language
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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