Registry for patients with Wilson's disease in France
Registre Wilson France
This study is collecting information from people with Wilson's disease in France to better understand the condition and improve treatment options.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 1000 (estimated) |
| Ages | 0 Years to 99 Years |
| Sex | All |
| Sponsor | Fondation Ophtalmologique Adolphe de Rothschild Research network |
| Locations | 1 site (Paris, Île-de-France Region) |
| Trial ID | NCT05231876 on ClinicalTrials.gov |
What this trial studies
This registry collects data from adults and children diagnosed with Wilson's disease to enhance understanding of its epidemiology, including onset age and geographical distribution in France. It aims to gather comprehensive information on therapies prescribed to patients and to conduct genetic studies to identify mutations associated with the disease. Data will be entered by healthcare professionals specializing in Wilson's disease, ensuring accuracy and reliability. The registry serves as a valuable resource for future research and treatment strategies.
Who should consider this trial
Good fit: Ideal candidates for this registry are individuals of all ages diagnosed with Wilson's disease.
Not a fit: Patients who do not have Wilson's disease or those unable to provide consent will not benefit from this registry.
Why it matters
Potential benefit: If successful, this registry could lead to improved diagnosis and treatment options for patients with Wilson's disease.
How similar studies have performed: While registries for rare diseases have shown success in improving understanding and treatment, this specific approach is novel in the context of Wilson's disease.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * All patients suffering from Wilson disease Exclusion Criteria: * Lack of written consent from the patient or their legal representative
Where this trial is running
Paris, Île-de-France Region
- Hôpital Fondation Adolphe de Rothschild — Paris, Île-de-France Region, France (Recruiting)
Study contacts
- Study coordinator: Aurélia Poujois, MD, PhD
- Email: apoujois@for.paris
- Phone: (0)148036656
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.