Observational study on Wilson's Disease
Official title: A Registered Cohort Study on Wilson's Disease
Run by First Affiliated Hospital of Fujian Medical University · NCT04012658 · Data updated 2026-11-12
This study looks at how Wilson's Disease affects people in different ways to help improve care for patients and their families.
Quick facts
| Study type | Observational |
|---|---|
| Sex | All |
| Enrollment | 2000 (estimated) |
| Sponsor | First Affiliated Hospital of Fujian Medical University Academic / other |
| Locations | 1 site (Fuzhou) |
| Status | Recruiting |
| Started | July 1, 2019 |
| Main results expected | December 2039 |
| Study ends | December 2049 |
| Registry record updated | September 23, 2019 |
| Trial ID | NCT04012658 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates include patients with a genetic diagnosis of Wilson's Disease, asymptomatic carriers, and their relatives.
✕Probably not a fit
Patients who are unable to comply with study procedures or visit schedules may not benefit from this study.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This study aims to explore the clinical spectrum and natural progression of Wilson's Disease through a multicenter observational approach. It will assess various clinical, genetic, and epigenetic features, as well as biomarkers in patients diagnosed with Wilson's Disease. The goal is to gather comprehensive data that can optimize clinical management for affected individuals. Participants will include patients, asymptomatic carriers, relatives, and healthy controls.
Why it matters
Potential benefit: If successful, this study could enhance understanding and management of Wilson's Disease, leading to improved patient outcomes.
How similar studies have gone: While there have been studies on Wilson's Disease, this specific observational approach focusing on natural history and genetic factors is relatively novel.
Who can join: the full rules
Show full inclusion / exclusion 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
Where it's running
-
First Affiliated Hospital of Fujian Medical University
Fuzhou, China Recruiting
Study contacts
- Study coordinator: Jin He, MD
- Email: hejinfjmu@hotmail.com
- Phone: 86-0591-87982772
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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PM577a: a one-time gene-editing therapy for Wilson disease
This study tests PM577a, a gene-editing treatment, to see if it is safe and may help people with Wilson disease who have a p.H1069Q ATP7B mutation.
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One-a-day trientine for newly diagnosed Wilson's disease
A new once-daily trientine formulation is being tested against d-Penicillamine as a first-line treatment for people with Wilson's disease, including both children 8 and older and adults.
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ATP7B mRNA (DSL101) therapy for Wilson disease
This treatment will test whether one or more IV infusions of ATP7B mRNA (DSL101) are safe and help control copper in adults with genetically confirmed Wilson disease.
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Investigating heart issues in Wilson's Disease
This study is testing how Wilson's Disease affects the heart in adults by using long-term heart monitoring to see if copper buildup causes any problems.
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International registry for Wilson's Disease patients
This study is gathering information from people with Wilson's Disease during their regular doctor visits to better understand the disease and how patients are managing it.
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Examining copper levels in breast milk of pregnant women with Wilson's disease
This study tests how treatment for Wilson's disease affects copper levels in the breast milk of pregnant women to ensure the health of both mom and baby during breastfeeding.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.