French Wilson Disease Registry

Recruiting now

Conditions studied: Wilson Disease

In brief

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.

Key facts

Study ID

NCT05231876

Run by

Fondation Ophtalmologique Adolphe de Rothschild

People needed

1000

Starts

2005-01-01

Expected to finish

2030-01-01

Last updated by the study team

2024-12-05

Who can join

Age: any, up to 99. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• All patients suffering from Wilson disease

You may not qualify if…

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

Where it is running

• Hôpital Fondation Adolphe de Rothschild — Paris, Île-de-France Region, France (enrolling)

Full record on ClinicalTrials.gov

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