Actively Recruiting
French Registry for Wilson Disease Patients of All Ages
Led by Fondation Ophtalmologique Adolphe de Rothschild · Updated on 2024-12-05
1000
Participants Needed
1
Research Sites
N/A
Total Duration
AI-Summary
What this Trial Is About
Researchers are gathering information about adults and children with Wilsons disease to better understand this rare condition. The study aims to collect extensive data on disease characteristics, such as the age when symptoms start, differences between liver-related and neurological forms, and where patients live in France. It also seeks to document all treatments used and identify genetic mutations linked to Wilsons disease through genetic studies. Participants clinical, biological, radiological, and genetic information will be recorded by doctors or specialists during routine care. The main activity involves entering detailed patient data such as age, gender, diagnosis date, symptoms, ethnicity, and family history into the Wilson Register. People taking part will have their disease-related information collected and stored, which takes about one hour. This registry helps researchers track the diseases patterns and treatments over time. Participation involves routine medical visits where data is gathered without additional interventions or treatments. The study started in 2005 and will continue collecting data through 2030.
CONDITIONS
Brief Title
French Wilson Disease Registry
Research Team
A
Aurélia Poujois, MD, PhD
A
Amélie Yavchitz, MD
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