French Wilson Disease Registry

Recruiting

• Conditions: Wilson Disease

• Registration Number: NCT05231876
• Lead Sponsor: Fondation Ophtalmologique Adolphe de Rothschild

Brief 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.

Detailed Description

Not available

Study Timeline

• Study Start: 2005-01-01
• Study First Submitted: 2022-02-04
• Study First Submitted QC: 2022-02-07
• Study First Posted: 2022-02-09
• Status Verified: 2024-06
• Last Update Submitted: 2024-12-03
• Last Update Posted: 2024-12-05
• Primary Completion: 2030-01-01
• Study Completion: 2030-01-01

Recruitment & Eligibility

• Status: RECRUITING
• Sex: All
• Target Recruitment: 1000

Inclusion Criteria

• All patients suffering from Wilson disease

Exclusion Criteria

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

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Recording of pathology-related information on the Wilson Register	1 hour	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.

Trial Locations

Locations (1)

Hôpital Fondation Adolphe de Rothschild; 🇫🇷 Paris, Ile-de-France, France