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French Wilson Disease Registry
Sponsor: Fondation Ophtalmologique Adolphe de Rothschild
Summary
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.
Official title: Registre Wilson France
Key Details
Gender
All
Age Range
0 Years - 99 Years
Study Type
OBSERVATIONAL
Enrollment
1000
Start Date
2005-01-01
Completion Date
2030-01-01
Last Updated
2024-12-05
Healthy Volunteers
No
Conditions
Interventions
Recording of pathology-related information on the Wilson Register
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
Locations (1)
Hôpital Fondation Adolphe de Rothschild
Paris, Île-de-France Region, France