NCT05231876

French Wilson Disease Registry

Registre Wilson France

• Status: Recruiting
• Phase: —
• Study type: Observational
• Enrollment: 1,000 (estimated)
• Sponsor: Fondation Ophtalmologique Adolphe de Rothschild · Network
• Sex: All
• Age: 0 Years – 99 Years
• Healthy volunteers: Not accepted

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.

Conditions

• Wilson Disease

Interventions

Type	Name	Description
OTHER	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

Timeline

• Start date: 2005-01-01
• Primary completion: 2030-01-01
• Completion: 2030-01-01
• First posted: 2022-02-09
• Last updated: 2024-12-05

Locations

1 site across 1 country: France