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Clinical trialNCT05239858RecruitingObservational

International Wilson's Disease Patient Registry (iWilson Registry)

SponsorOrphalanEnrollment500Wilson's Disease
View the registry record on ClinicalTrials.gov

Summary

The lay summary the sponsor registered on ClinicalTrials.gov.

Longitudinal, observational, non-interventional, standard of care Registry. Data will be collected from the routinely scheduled WD clinic visits at approximately 6-12 month intervals. At enrolment, in addition to data from the clinic visit, retrospective data will be collected from the diagnostic evaluation and any relevant past medical history and a summary of WD medication history.
clinicaltrials.gov ↗

Investigators

The overall officials registered on this study. Names that resolve to a FindMyKOL profile link to it; the rest are shown as registered.

A profile link is shown only when the registered name resolves to a person record with a confident, namesake-checked match; ambiguous names stay unlinked.

Sites

16 registered facilities, with the per-site recruitment status where the registry publishes one. ClinicalTrials.gov does not publish per-site enrollment counts.

Belgium
  • University Hospital Leuven

    Leuven, Belgium

    David Cassiman, Dr.
    Recruiting
France
  • Hospices Civils de Lyon

    Bron, Auvergne-Rhône-Alpes, France

    Eduardo Couchonnal Bedoya
    Recruiting
  • Hf Adolphe de Rothschild

    Paris, Île-de-France Region, France

    Aurelia Poujois
    Recruiting
Germany
  • Charite-Univeritatsmedizin Berlin Hospital

    Berlin, Germany

    Frank Tacke, Dr.
    Recruiting
  • Universitatsklinikum Dusseldorf

    Düsseldorf, Germany

    Christian Hartmann, Dr.
    Recruiting
  • Hannover Medical School (mhh)

    Hanover, Germany

    Heiner Wedemeyer, Dr.
    Recruiting
  • Universitätsklinikum Leipzig

    Leipzig, Germany

    Thomas Berg, Dr.
    Recruiting
Poland
  • Institute of Psychiatry and Neurology

    Warsaw, Poland

    Anna Czlonkowska, Dr.
    Recruiting
  • the Children'S Memorial Health Institute

    Warsaw, Poland

    Piotrem Socha, Prof.
    Recruiting
Saudi Arabia
  • King Faisal Specialist Hospital in Riyadh

    Riyāḑ, Riyadh Region, Saudi Arabia

    Saad Alghamdi
    Recruiting
Spain
  • Hospital Universitario Gc Dr Negrín

    Las Palmas de Gran Canaria, Canary Islands, Spain

    Quinones, Dr.
    Recruiting
  • University Hospital Clínic de Barcelona, C. de Villarroel

    Barcelona, Spain

    Xavier Forns, Dr.
    Recruiting
  • Hospital Universitario Virgen del Rocío

    Seville, Spain

    Javier Ampuero, Dr.
    Recruiting
  • Hospital Universitario Y Politécnico la Fe

    Valencia, Spain

    Marina Berenguer, Dr.
    Recruiting
United Kingdom
  • Leeds Teaching Hospitals Nhs Trust

    Leeds, United Kingdom

    Joanna Moore, Dr.
    Recruiting
  • Royal Free Hospital

    London, United Kingdom

    Emmanouil Tsochatzis, Professor
    Recruiting

Site investigator names are published by ClinicalTrials.gov only while a study recruits, so completed studies list sites without them.

Drugs studied

No drug or biological interventions are in our data for this study. It may test a procedure, device or behavioral intervention, or the intervention list isn't in our current snapshot. See the registry record ↗. Why? →

Registration & key dates

Registry attributes as recorded on the ClinicalTrials.gov study record.

Start
29 Jun 2022
Primary completion
31 Dec 2027
Completion
31 Dec 2027
Last update posted
11 Aug 2026
Registered enrollment
500
Registry id
NCT05239858
clinicaltrials.gov ↗

Source: ClinicalTrials.gov, via the CTTI AACT database, data as of 24 Aug 2026. Registry facts are shown as registered by the study sponsor; FindMyKOL does not interpret them.