International Wilson's Disease Patient Registry (iWilson Registry)
ConditionWilson's Disease
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
Age12+
SponsorOrphalan
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.
Patient is able to provide, and has provided, written informed consent/assent
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
None
Orphalan
Lead sponsor
Ergomed
Collaborator