French Wilson Disease Registry

Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
Age0-99
SponsorFondation Ophtalmologique Adolphe de Rothschild

About this trial

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.

Eligibility criteria

This trial does not accept healthy volunteers

Qualifiers

All patients suffering from Wilson disease

Disqualifiers

Lack of written consent from the patient or their legal representative

Trial population

All patients suffering from Wilson disease

Trial design

Design model

Cohort

Time perspective

Prospective

Treatments tested in this trial

  • Recording of pathology-related information on the Wilson Register

    Other intervention

    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

Treatment groups

No treatment groups listed

Trial outcomes

Primary outcomes

1

Recording of pathology-related information on the Wilson Register

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.

Time frame
1 hour

Secondary outcomes

Other outcomes

Sponsors and contacts

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