Clinical trial Recruiting at 1 site Observational

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 typeObservational
SexAll
Enrollment2000 (estimated)
SponsorFirst Affiliated Hospital of Fujian Medical University
Academic / other
Locations1 site (Fuzhou)
StatusRecruiting
StartedJuly 1, 2019
Main results expectedDecember 2039
Study endsDecember 2049
Registry record updatedSeptember 23, 2019
Trial IDNCT04012658 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

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

  • 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.

    Recruiting at 2 sites Phase 1/2 Prime Medicine, Inc. · New Haven, Connecticut and 3 other locations · NCT07748403

  • 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.

    Recruiting at 5 sites Phase 3 Orphalan · Denver, Colorado and 9 other locations · NCT07465718

  • 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.

    Recruiting Early Phase 1 DSciLab Co., Ltd. · Hefei, Anhui · NCT07240896

  • 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.

    Recruiting Fondation Ophtalmologique Adolphe de Rothschild · Paris · NCT05493605

  • 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.

    Recruiting at 16 sites Orphalan · Leuven and 15 other locations · NCT05239858

  • 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.

    Recruiting Fondation Ophtalmologique Adolphe de Rothschild · Paris · NCT05183165

How to take part

  1. Review the eligibility criteria above with your treating physician.
  2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
  3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.
Last reviewed 2026-11-14 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.