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International Wilson's Disease Patient Registry (iWilson Registry)

RECRUITINGSponsored by Orphalan
Actively Recruiting
SponsorOrphalan
Started2022-06-29
Est. completion2027-12
Eligibility
Age12 Years+
Healthy vol.Accepted

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 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

Age: 12 Years+Healthy volunteers accepted
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

Conditions2

Liver DiseaseWilson's Disease

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