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

NCT ID NCT05239858

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

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.

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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

Contacts and locations

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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

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