Informations générales (source: ClinicalTrials.gov)
Registre Wilson France (WIL-FR)
Observational [Patient Registry]
Fondation Ophtalmologique Adolphe de Rothschild (Voir sur ClinicalTrials)
janvier 2005
janvier 2030
06 décembre 2024
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.
Etablissements
| Les établissements d'Île-de-France dont les données sont issues de ClinicalTrials.gov Origine et niveau de fiabilité des données | |||||
|---|---|---|---|---|---|
| HOPITAL FONDATION A. DE ROTHSCHILD | Aurélia Poujois, MD, PhD | Contact (sur clinicalTrials) | |||
Critères
Tous
Inclusion Criteria:
- All patients suffering from Wilson disease
- All patients suffering from Wilson disease
- Lack of written consent from the patient or their legal representative