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French Wilson Disease Registry

NCT ID: NCT05231876

Last Updated: 2024-12-05

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

1000 participants

Study Classification

OBSERVATIONAL

Study Start Date

2005-01-01

Study Completion Date

2030-01-01

Brief Summary

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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.

Detailed Description

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Conditions

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Wilson Disease

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Interventions

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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

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

* All patients suffering from Wilson disease

Exclusion Criteria

* Lack of written consent from the patient or their legal representative
Minimum Eligible Age

0 Years

Maximum Eligible Age

99 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Fondation Ophtalmologique Adolphe de Rothschild

NETWORK

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Locations

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Hôpital Fondation Adolphe de Rothschild

Paris, Île-de-France Region, France

Site Status RECRUITING

Countries

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France

Central Contacts

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Aurélia Poujois, MD, PhD

Role: CONTACT

Phone: (0)148036656

Email: [email protected]

Amélie Yavchitz, MD

Role: CONTACT

Phone: (0)148036454

Email: [email protected]

Facility Contacts

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Aurélia Poujois, MD, PhD

Role: primary

Amélie Yavchitz, MD, PhD

Role: backup

Related Links

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https://www.crmrwilson.com/registres/

Wilson France Register

Other Identifiers

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CD/EB_19-003_APS

Identifier Type: -

Identifier Source: org_study_id