Actively Recruiting
Prospective Study on the Clinical Features and Progression of Wilsons Disease Including Patients, Carriers, Relatives, and Healthy Controls
Led by Wan-Jin Chen · Updated on 2019-09-23
2000
Participants Needed
1
Research Sites
521 weeks
Total Duration
AI-Summary
What this Trial Is About
Researchers are conducting a prospective multicenter observational study to better understand Wilsons Disease, focusing on its clinical spectrum and natural progression. The study also aims to explore clinical, genetic, epigenetic features, and biomarkers associated with Wilsons Disease to improve patient care and management. This study does not involve any medical interventions or treatments. Instead, participants are classified into groups including patients genetically diagnosed with Wilsons Disease, asymptomatic carriers, relatives of patients or carriers, and unrelated healthy controls. The study follows these groups over time without altering their usual care. Participants will be regularly evaluated using the Unified Wilsons Disease Rating Scale UWDRS over a period that may extend up to 30 years. The study involves collecting clinical data and monitoring changes in symptoms and biomarkers. This long-term follow-up helps researchers track the diseases progression and gather valuable information to support future treatment strategies.
CONDITIONS
Brief Title
A Registered Cohort Study on Wilson's Disease
Research Team
J
Jin He, MD
Y
Yi Lin, MD.PhD
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