International Wilson's Disease Patient Registry (iWilson Registry)
ConditionWilson's Disease
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
Age12+
SponsorOrphalan
About this trial
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 criteria
This trial does not accept healthy volunteersQualifiers
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
Disqualifiers
None
Trial population
The Registry aims to be as inclusive as possible. All patients with WD (adult and paediatric ≥12) who provide informed consent/assent can be included. They will be approached during regular follow up visits for ongoing care of their Wilson's Disease by their primary physician.
Trial design
Design model
Cohort
Time perspective
Prospective
Treatments tested in this trial
Not listed
Trial groups
No trial groups listed
Trial outcomes
Primary outcomes
1
Describe the natural history of treated WD
Describe the natural history of treated WD and to explore the clinical phenotype, geographic, ethnic and gender influences on the course of the condition.
Time frame
5 yearsSponsors and contacts
Click on the lead sponsor to view all of their trials.
Orphalan
Lead sponsor
Ergomed
Collaborator
Source ClinicalTrials.gov