WIL-FR: Wilson France Register

Sponsor

Fondation Ophtalmologique Adolphe de Rothschild (Other)

Overall Status

Recruiting

CT.gov ID

NCT05231876

Collaborator

(none)

1,000

Enrollment

Location

300

Anticipated Duration (Months)

3.3

Patients Per Site Per Month

Study Details

Study Description

Brief 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.

Condition or Disease	Intervention/Treatment	Phase
Wilson Disease	Other: Recording of pathology-related information on the Wilson Register

Study Design

Study Type:

Observational [Patient Registry]

Anticipated Enrollment :

1000 participants

Observational Model:

Cohort

Time Perspective:

Prospective

Official Title:

Registre Wilson France

Actual Study Start Date :

Jan 1, 2005

Anticipated Primary Completion Date :

Jan 1, 2030

Anticipated Study Completion Date :

Jan 1, 2030

Outcome Measures

Primary Outcome Measures

Recording of pathology-related information on the Wilson Register [1 hour]
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.

Eligibility Criteria

Criteria

Ages Eligible for Study:

0 Years to 99 Years

Sexes Eligible for Study:

All

Accepts Healthy Volunteers:

Inclusion Criteria:

All patients suffering from Wilson disease

Exclusion Criteria:

Lack of written consent from the patient or their legal representative

Contacts and Locations

Locations

	Site	City	State	Country	Postal Code
1	Hôpital Fondation Adolphe de Rothschild	Paris	Ile-de-France	France	75019

Sponsors and Collaborators

Fondation Ophtalmologique Adolphe de Rothschild

Investigators

None specified.

Study Documents (Full-Text)

None provided.

More Information

Additional Information:

Wilson France Register

Publications

None provided.

Responsible Party:

Fondation Ophtalmologique Adolphe de Rothschild

ClinicalTrials.gov Identifier:

NCT05231876

Other Study ID Numbers:

CD/EB_19-003_APS

First Posted:

Feb 9, 2022

Last Update Posted:

Feb 9, 2022

Last Verified:

Feb 1, 2022

Individual Participant Data (IPD) Sharing Statement:

Plan to Share IPD:

Studies a U.S. FDA-regulated Drug Product:

Studies a U.S. FDA-regulated Device Product:

Additional relevant MeSH terms:

Hepatolenticular Degeneration

Study Results

No Results Posted as of Feb 9, 2022