Actively Recruiting
International Wilson's Disease Patient Registry (iWilson Registry)
Led by Orphalan · Updated on 2025-07-03
500
Participants Needed
16
Research Sites
283 weeks
Total Duration
On this page
Sponsors
O
Orphalan
Lead Sponsor
E
Ergomed
Collaborating Sponsor
AI-Summary
What this Trial Is About
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.
CONDITIONS
Official Title
International Wilson's Disease Patient Registry (iWilson Registry)
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Able to provide written informed consent or assent
- Written documentation obtained according to country and local privacy laws (e.g., Authorization for Use and Release of Health Research Study Information in US; Data Protection Consent in EU)
- Diagnosed with Wilson's Disease, including pre-symptomatic and those with other health conditions
- Receiving any treatment for Wilson's Disease, including prescribed, homeopathic, traditional therapies, or no therapy at all
You will not qualify if you...
- Refusal to provide informed consent by the patient or legally authorized guardian
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 16 locations
1
University Hospital Leuven
Leuven, Belgium
Actively Recruiting
2
Hospices Civils de Lyon
Bron, Auvergne-Rhône-Alpes, France, 69677
Actively Recruiting
3
HF Adolphe de Rothschild
Paris, Île-de-France Region, France
Actively Recruiting
4
Charite-Univeritatsmedizin Berlin Hospital
Berlin, Germany
Actively Recruiting
5
Universitatsklinikum Dusseldorf
Düsseldorf, Germany
Actively Recruiting
6
Hannover Medical School (MHH)
Hanover, Germany
Actively Recruiting
7
Universitätsklinikum Leipzig
Leipzig, Germany
Actively Recruiting
8
Institute of Psychiatry and Neurology
Warsaw, Poland
Actively Recruiting
9
The Children's Memorial Health Institute
Warsaw, Poland
Actively Recruiting
10
King Faisal Specialist Hospital in Riyadh
Riyāḑ, Riyadh Region, Saudi Arabia, 11564
Actively Recruiting
11
Hospital Universitario GC Dr Negrín
Las Palmas de Gran Canaria, Canary Islands, Spain
Actively Recruiting
12
University Hospital Clínic de Barcelona, C. de Villarroel
Barcelona, Spain
Actively Recruiting
13
Hospital Universitario Virgen del Rocío
Seville, Spain
Actively Recruiting
14
Hospital Universitario Y Politécnico La Fe
Valencia, Spain
Actively Recruiting
15
Leeds Teaching Hospitals NHS Trust
Leeds, United Kingdom
Actively Recruiting
16
Royal Free Hospital
London, United Kingdom
Actively Recruiting
Research Team
C
Carla Bennett
CONTACT
M
Maureen Richardson
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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