A Registered Cohort Study on Wilson's Disease
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- The protocol lists: No intervention.
- Who it may be relevant to
- Registry conditions: Wilson's Disease. Basic parameters: No limits · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- China
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
Unsure about the terms? Read our patient guide →
Overview
The aim of this study is to determine the clinical spectrum and natural progression of Wilson's Disease in a prospective multicenter natural history study, to assess the clinical, genetic, epigenetic features and biomarkers of patients with Wilson's Disease to optimize clinical management.
Interventions
- Other No intervention
No intervention
Primary outcome measures
- The change of Unified Wilson's Disease Rating Scale (UWDRS) [Time frame: Up to 30years]
Eligibility criteria
Inclusion criteria
- 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
Exclusion criteria
\* Participants are unable to comply with study procedures and visit schedule
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: Yes
Study design
- Observational model
- Cohort
Study locations
China · 1 center
- First Affiliated Hospital of Fujian Medical University — Fuzhou
Identifiers
NCT: NCT04012658 · MRCTA,ECFAH OF FMU[2019]197