Actively Recruiting
A Registered Cohort Study on Wilson's Disease
Led by Wan-Jin Chen · Updated on 2019-09-23
2000
Participants Needed
1
Research Sites
521 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
Researchers are conducting a prospective multicenter observational study to better understand Wilson's Disease, focusing on its clinical spectrum and natural progression. The study also aims to explore clinical, genetic, epigenetic features, and biomarkers associated with Wilson's 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 Wilson's 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 Wilson's 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 disease's progression and gather valuable information to support future treatment strategies.
CONDITIONS
Brief Title
A Registered Cohort Study on Wilson's Disease
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Patients with the genetic diagnosis of Wilson's Disease
- Asymptomatic Wilson's Disease carriers
- Relatives of Wilson's Disease patients or carriers
- Unrelated healthy controls
- Participants or Parent(s)/legal guardian(s) willing and able to complete the informed consent process
You will not qualify if you...
- Participants who are unable to comply with study procedures and visit schedule
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 30 years
Participants are observed over time to monitor the progression and changes related to Wilson's Disease.
Periodic visits according to study schedule
Trial Site Locations
Total: 1 location
1
First Affiliated Hospital of Fujian Medical University
Fuzhou, China
Actively Recruiting
Research Team
J
Jin He, MD
Y
Yi Lin, MD.PhD
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
4
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