Status:
RECRUITING
International Wilson's Disease Patient Registry (iWilson Registry)
Lead Sponsor:
Orphalan
Collaborating Sponsors:
Ergomed
Conditions:
Wilson's Disease
Eligibility:
All Genders
12+ years
Brief 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...
Detailed Description
This is a retrospective/prospective observational registry without a control group. A standardised collection tool will be utilised to capture and compare data. The registry will use common data eleme...
Eligibility Criteria
Inclusion
- 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
- 1\. Refusal of informed consent by either patient or their legally acceptable guardian
Key Trial Info
Start Date :
June 29 2022
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
December 1 2027
Estimated Enrollment :
500 Patients enrolled
Trial Details
Trial ID
NCT05239858
Start Date
June 29 2022
End Date
December 1 2027
Last Update
July 3 2025
Active Locations (16)
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1
University Hospital Leuven
Leuven, Belgium
2
Hospices Civils de Lyon
Bron, Auvergne-Rhône-Alpes, France, 69677
3
HF Adolphe de Rothschild
Paris, Île-de-France Region, France
4
Charite-Univeritatsmedizin Berlin Hospital
Berlin, Germany