RecruitingNCT05239858

International Wilson's Disease Patient Registry (iWilson Registry)


Sponsor

Orphalan

Enrollment

500 participants

Start Date

Jun 29, 2022

Study Type

OBSERVATIONAL

Conditions

Summary

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.


Eligibility

Min Age: 12 Years

Inclusion Criteria6

  • Patient is able to provide, and has provided, written informed consent/assent
  • Written documentation has been obtained in accordance with the relevant country and local privacy requirements, where applicable, including:
  • For US sites: Authorization for Use and Release of Health Research Study Information
  • For EU sites: Data Protection Consent
  • All patients diagnosed with WD including pre-symptomatic individuals and individuals with co-morbidities/diagnoses
  • Any treatments including prescribed and homeopathic/traditional therapies or naive patients on no therapy

Exclusion Criteria1

  • \. Refusal of informed consent by either patient or their legally acceptable guardian

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Locations(16)

University Hospital Leuven

Leuven, Belgium

Hospices Civils de Lyon

Bron, Auvergne-Rhône-Alpes, France

HF Adolphe de Rothschild

Paris, Île-de-France Region, France

Charite-Univeritatsmedizin Berlin Hospital

Berlin, Germany

Universitatsklinikum Dusseldorf

Düsseldorf, Germany

Hannover Medical School (MHH)

Hanover, Germany

Universitätsklinikum Leipzig

Leipzig, Germany

Institute of Psychiatry and Neurology

Warsaw, Poland

The Children's Memorial Health Institute

Warsaw, Poland

King Faisal Specialist Hospital in Riyadh

Riyāḑ, Riyadh Region, Saudi Arabia

Hospital Universitario GC Dr Negrín

Las Palmas de Gran Canaria, Canary Islands, Spain

University Hospital Clínic de Barcelona, C. de Villarroel

Barcelona, Spain

Hospital Universitario Virgen del Rocío

Seville, Spain

Hospital Universitario Y Politécnico La Fe

Valencia, Spain

Leeds Teaching Hospitals NHS Trust

Leeds, United Kingdom

Royal Free Hospital

London, United Kingdom

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NCT05239858


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