French Wilson Disease Registry (WIL-FR)

Fondation Ophtalmologique Adolphe de Rothschild

Status: Enrolling

Conditions: Wilson Disease

Treatments: Other: Recording of pathology-related information on the Wilson Register

Study type: Observational

Funder types: NETWORK

Identifiers

NCT05231876

CD/EB_19-003_APS

Details and patient eligibility

About

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.

Enrollment: 1,000 estimated patients

Sex: All

Ages: Under 99 years old

Volunteers: No Healthy Volunteers

Inclusion criteria

• All patients suffering from Wilson disease

Exclusion criteria

• Lack of written consent from the patient or their legal representative