An observational study in Wilson Disease, sponsored by Fondation Ophtalmologique Adolphe de Rothschild. Recruiting at 1 site in France. Open to participants aged 0 Years to 99 Years. Per ClinicalTrials.gov, last updated 2024-12-05.
Sponsored by Fondation Ophtalmologique Adolphe de Rothschild · Observational
This registry concerns adults and children with Wilson's disease. The collection of a large amount of data will allow a better understanding of the epidemiology of this rare disease, in particular the age of onset according to the hepatic or hepato-neurological forms, but also the geographical distribution of patients consulting in France. This database will also make it possible to know all the therapies prescribed to "Wilsonian" patients. The genetic study of these patients will make it possible to specify the various genetic mutations involved in Wilson's disease. The information (clinical, biological, radiological and genetic) relating to the disease will be entered by a doctor or a professional specialising in Wilson's disease.
78 studies on the registry are indexed under Hepatolenticular Degeneration; 30 are open to participants now.
This study's planned enrollment of 1,000 is above the median of 69 across 34 observational studies indexed under Hepatolenticular Degeneration.
Browse Hepatolenticular Degeneration studies →Fondation Ophtalmologique Adolphe de Rothschild is the lead sponsor of 311 studies on the registry; 77 are open to participants now.
Counted across the registry records on this site, refreshed daily.
All patients suffering from Wilson disease
Exclusion Criteria:
Age, gender, date of diagnosis, clinical symptoms, ethnic charateristics and family tree will be collected and recorded on the Wilson Register during routine clinical care
Recording of pathology-related information on the Wilson Register
The patient's age, sex, date of diagnosis, clinical symptoms, family tree and ethnic characteristics are collected by a physician or professional specialising in Wilson's disease during a routine care consultation.
Time frame: 1 hour
Plan to share: No
Eligibility is decided by the study team. Share this record with your doctor or contact the team directly.
Contact study teamGet an email when the registry record changes — status, dates, results — or when someone posts here.
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Hepatolenticular Degeneration→
Fondation Ophtalmologique Adolphe de Rothschild