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International Wilson's Disease Patient Registry (iWilson Registry)

RecruitingN/A

Sponsor: Orphalan

Conditions: Wilson's Disease

Countries: Belgium, France, Germany, Poland, Saudi Arabia, Spain, United Kingdom

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 overview

Sex: ALL

Age: 12 Years to —

Healthy volunteers: No

Study type: OBSERVATIONAL

Eligibility criteria

Inclusion Criteria:

1. Patient is able to provide, and has provided, written informed consent/assent
2. Written documentation has been obtained in accordance with the relevant country and local privacy requirements, where applicable, including:

   1. For US sites: Authorization for Use and Release of Health Research Study Information
   2. For EU sites: Data Protection Consent
3. All patients diagnosed with WD including pre-symptomatic individuals and individuals with co-morbidities/diagnoses
4. Any treatments including prescribed and homeopathic/traditional therapies or naive patients on no therapy

Exclusion Criteria:

1\. Refusal of informed consent by either patient or their legally acceptable guardian

Locations (16)

Leuven, Belgium
Bron, Auvergne-Rhône-Alpes, France
Paris, Île-de-France Region, France
Berlin, Germany
Düsseldorf, Germany
Hanover, Germany
Leipzig, Germany
Warsaw, Poland
Warsaw, Poland
Riyāḑ, Riyadh Region, Saudi Arabia
Las Palmas de Gran Canaria, Canary Islands, Spain
Barcelona, Spain
Seville, Spain
Valencia, Spain
Leeds, United Kingdom
London, United Kingdom