International Wilson's Disease Patient Registry (iWilson Registry)
Recruiting now
Conditions studied: Wilson's Disease
In brief
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.
Key facts
- Study ID
- NCT05239858
- Run by
- Orphalan
- People needed
- 500
- Starts
- 2022-06-29
- Expected to finish
- 2027-12-01
- Last updated by the study team
- 2025-07-03
Who can join
Age: 12 and older. Sex: any. Healthy volunteers: not accepted.
You may qualify if…
- 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
You may not qualify if…
- Refusal of informed consent by either patient or their legally acceptable guardian
Where it is running
- University Hospital Leuven — Leuven, Belgium (enrolling)
- Hospices Civils de Lyon — Bron, Auvergne-Rhône-Alpes, France (enrolling)
- HF Adolphe de Rothschild — Paris, Île-de-France Region, France (enrolling)
- Charite-Univeritatsmedizin Berlin Hospital — Berlin, Germany (enrolling)
- Universitatsklinikum Dusseldorf — Düsseldorf, Germany (enrolling)
- Hannover Medical School (MHH) — Hanover, Germany (enrolling)
- Universitätsklinikum Leipzig — Leipzig, Germany (enrolling)
- Institute of Psychiatry and Neurology — Warsaw, Poland (enrolling)
- The Children's Memorial Health Institute — Warsaw, Poland (enrolling)
- King Faisal Specialist Hospital in Riyadh — Riyāḑ, Riyadh Region, Saudi Arabia (enrolling)
- Hospital Universitario GC Dr Negrín — Las Palmas de Gran Canaria, Canary Islands, Spain (enrolling)
- University Hospital Clínic de Barcelona, C. de Villarroel — Barcelona, Spain (enrolling)
- Hospital Universitario Virgen del Rocío — Seville, Spain (enrolling)
- Hospital Universitario Y Politécnico La Fe — Valencia, Spain (enrolling)
- Leeds Teaching Hospitals NHS Trust — Leeds, United Kingdom (enrolling)
- Royal Free Hospital — London, United Kingdom (enrolling)
Full record on ClinicalTrials.gov
Trial information comes from ClinicalTrials.gov and is refreshed daily. TrialsForMe does not provide medical care and does not run the studies it lists.