Den här översättningen är inte klar ännu. Den här sidan är just nu på engelska.

Gå till den engelska sidan

Cure My Disease

Don't miss your cure!

 Log in / Sign up

Can a global patient registry unlock the mysteries of Wilson's disease?

NCT ID NCT05239858

Knowledge-focused Sponsor: Orphalan Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Aug 11, 2026 · Last updated Aug 12, 2026 · Updated 1 time

Summary

This study is building a large international registry of people with Wilson's disease, a rare genetic condition that causes copper to build up in the body. Researchers will collect data from routine clinic visits over several years to describe the natural course of the disease in treated patients. The goal is to understand how the condition evolves and how factors like geography, ethnicity, and gender might influence its progression.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
This registry could help doctors better predict how Wilson's disease progresses and tailor treatments to individual patients.
What could go wrong
As an observational study, it cannot prove what causes differences in outcomes, and results may take years to emerge.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 500 people

The number the study aims to enrol. It can still change while the study runs.

Started

Jun 2022

Expected to finish

Dec 2027

An estimate. End dates often move.

Lead sponsor

A company

The lead sponsor is a pharmaceutical, biotech, or medical-device company.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

The Registry aims to be as inclusive as possible. All patients with WD (adult and paediatric ≥12) who provide informed consent/assent can be included. They will be approached during regular follow up visits for ongoing care of their Wilson's Disease by their primary physician.

Ages

12 years and older

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: 1. Patient is able to provide, and has provided, written informed consent/assent 2. Written documentation has been obtained in accordance with the relevant country and local privacy requirements, where applicable, including: 1. For US sites: Authorization for Use and Release of Health Research Study Information 2. For EU sites: Data Protection Consent 3. All patients diagnosed with WD including pre-symptomatic individuals and individuals with co-morbidities/diagnoses 4. Any treatments including prescribed and homeopathic/traditional therapies or naive patients on no therapy Exclusion Criteria: 1\. Refusal of informed consent by either patient or their legally acceptable guardian

Get updates

Get notified about this study

Sign up to get updates when this study changes or when new studies for Wilson's disease are added.

Vår säkerhetsrekommendation!

Genom att skicka in godkänner du våra Användarvillkor

Conditions

The condition(s) this trial relates to.

Wilson disease

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Wilson's disease

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The study's own enquiry address

    This study publishes an address for enquiries. See it below .

  2. The places running it

    16 sites in 7 countries. The list below names each one and where it is.

  3. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  4. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Study contacts

  • Contact

    Email: •••••@•••••

  • Contact

    Email: •••••@•••••

Locations

  • Charite-Univeritatsmedizin Berlin Hospital

    RECRUITING

    Berlin, Germany

  • HF Adolphe de Rothschild

    RECRUITING

    Paris, Île-de-France Region, France

  • Hannover Medical School (MHH)

    RECRUITING

    Hanover, Germany

  • Hospices Civils de Lyon

    RECRUITING

    Bron, Auvergne-Rhône-Alpes, 69677, France

  • Hospital Universitario GC Dr Negrín

    RECRUITING

    Las Palmas de Gran Canaria, Canary Islands, Spain

  • Hospital Universitario Virgen del Rocío

    RECRUITING

    Seville, Spain

  • Hospital Universitario Y Politécnico La Fe

    RECRUITING

    Valencia, Spain

  • Institute of Psychiatry and Neurology

    RECRUITING

    Warsaw, Poland

  • King Faisal Specialist Hospital in Riyadh

    RECRUITING

    Riyāḑ, Riyadh Region, 11564, Saudi Arabia

  • Leeds Teaching Hospitals NHS Trust

    RECRUITING

    Leeds, United Kingdom

  • Royal Free Hospital

    RECRUITING

    London, United Kingdom

  • The Children's Memorial Health Institute

    RECRUITING

    Warsaw, Poland

  • Universitatsklinikum Dusseldorf

    RECRUITING

    Düsseldorf, Germany

  • University Hospital Clínic de Barcelona, C. de Villarroel

    RECRUITING

    Barcelona, Spain

  • University Hospital Leuven

    RECRUITING

    Leuven, Belgium

  • Universitätsklinikum Leipzig

    RECRUITING

    Leipzig, Germany

More trials for these conditions

Other studies related to the condition(s) this trial covers.