Actively Recruiting
French Wilson Disease Registry Collecting Clinical and Genetic Data on Wilson Disease Patients
Led by Fondation Ophtalmologique Adolphe de Rothschild · Updated on 2024-12-05
1000
Participants Needed
1
Research Sites
N/A
Total Duration
On this page
AI-Summary
What this Trial Is About
Researchers are gathering information about adults and children with Wilson's 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 Wilson's 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 disease's 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
Who Can Participate
Eligibility Criteria
You may qualify if you...
- All patients suffering from Wilson disease
You will not qualify if you...
- Lack of written consent from the patient or their legal representative
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person)
Duration - Up to 8 years
Participants who undergo routine care are observed, and clinical and genetic data related to Wilson disease are recorded during routine healthcare visits.
Data collected during routine clinical care visits
Trial Site Locations
Total: 1 location
1
Hôpital Fondation Adolphe de Rothschild
Paris, Île-de-France Region, France, 75019
Actively Recruiting
Research Team
A
Aurélia Poujois, MD, PhD
A
Amélie Yavchitz, MD
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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