Registry for patients with Wilson's disease in France

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

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.

Why it matters

Who can join: the full rules

Inclusion Criteria:

* All patients suffering from Wilson disease

Exclusion Criteria:

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

Where it's running

• 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

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• PM577a: a one-time gene-editing therapy for Wilson disease

  This study tests PM577a, a gene-editing treatment, to see if it is safe and may help people with Wilson disease who have a p.H1069Q ATP7B mutation.

  Recruiting at 2 sites Phase 1/2 Prime Medicine, Inc. · New Haven, Connecticut and 3 other locations · NCT07748403

• Best timing for 24-hour urine copper after a brief treatment break

  This will see if a 24-hour urine copper test taken after a short, supervised pause in treatment reflects body copper levels in stable Wilson disease patients.

  Recruiting Yale University · New Haven, Connecticut · NCT07301216

• Renal Involvement in Wilson's Disease

  This study tests how Wilson's disease affects the kidneys and who might be at risk for kidney problems.

  Recruiting Fondation Ophtalmologique Adolphe de Rothschild · Paris · NCT07075393

• Skin effects of D-penicillamine in people with Wilson disease

  This project will use silicone molds and confocal imaging to see if D-penicillamine changes skin elasticity in people with Wilson disease compared with matched healthy volunteers.

  Recruiting Centre Hospitalier Universitaire de Saint Etienne · Bron and 1 other locations · NCT06945081

• Evaluating LY-M003 Injection for Wilson Disease

  This study is testing a new gene therapy called LY-M003 to see if it is safe and effective for people with Wilson Disease.

  Recruiting Early Phase 1 First Affiliated Hospital of Zhejiang University · Hangzhou, Zhejiang · NCT06650319

• Registry for Rare Diseases

  This study is creating a detailed registry to collect information on rare diseases like amyloidosis and sarcoidosis to help improve how they are diagnosed and treated.

  Recruiting Hospital Italiano de Buenos Aires · Buenos Aires, Buenos Aires · NCT06573723

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.