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Clinical Trials in Spain / NCT05239858
Recruiting Observational

International Wilson's Disease Patient Registry (iWilson Registry)

NCT05239858 · tracked via the Priya Life Science Spain tracker
Sponsor
Orphalan
Phase
Observational
Started
2022-06-29
Last updated
2026-08-11

Condition(s) studied

Wilson's Disease

Study 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

Sex
ALL
Min age
12 Years
Max age
—
Healthy volunteers
No
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

Primary outcome measure(s)

  • Describe the natural history of treated WD — 5 years
    Describe the natural history of treated WD and to explore the clinical phenotype, geographic, ethnic and gender influences on the course of the condition.

Trial sites (16)

FacilityCityRegionStatus
University Hospital Leuven Leuven Belgium Recruiting
Hospices Civils de Lyon Bron Auvergne-Rhône-Alpes Recruiting
HF Adolphe de Rothschild Paris Île-de-France Region Recruiting
Charite-Univeritatsmedizin Berlin Hospital Berlin Germany Recruiting
Universitatsklinikum Dusseldorf Düsseldorf Germany Recruiting
Hannover Medical School (MHH) Hanover Germany Recruiting
Universitätsklinikum Leipzig Leipzig Germany Recruiting
Institute of Psychiatry and Neurology Warsaw Poland Recruiting
The Children's Memorial Health Institute Warsaw Poland Recruiting
King Faisal Specialist Hospital in Riyadh Riyāḑ Riyadh Region Recruiting
Hospital Universitario GC Dr Negrín Las Palmas de Gran Canaria Canary Islands Recruiting
University Hospital Clínic de Barcelona, C. de Villarroel Barcelona Spain Recruiting
Hospital Universitario Virgen del Rocío Seville Spain Recruiting
Hospital Universitario Y Politécnico La Fe Valencia Spain Recruiting
Leeds Teaching Hospitals NHS Trust Leeds United Kingdom Recruiting
Royal Free Hospital London United Kingdom Recruiting
Official registry record

This page summarises publicly available registry data for informational purposes — not medical advice. Eligibility is determined by each study team; patients should discuss participation with their clinician.

View NCT05239858 on ClinicalTrials.gov ↗ ← All trials in Spain