French Wilson Disease Registry
NCT05231876 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 1000
Last updated 2024-12-05
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
- 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
Sponsors & Collaborators
-
Fondation Ophtalmologique Adolphe de Rothschild
lead NETWORK
Eligibility
- Min Age
- 0 Years
- Max Age
- 99 Years
- Sex
- ALL
- Healthy Volunteers
- No
Timeline & Regulatory
- Start
- 2005-01-01
- Primary Completion
- 2030-01-01
- Completion
- 2030-01-01
Countries
- France
Study Locations
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