- International Wilson’s Disease Patient Registry (iWilson Registry) — Recruiting • Gastroenterology • NCT05239858.
- What is being tested: The iWilson Registry is a longitudinal, observational study collecting standardised clinical data from Wilson's disease patients attending routine clinic visits over 6-12 month intervals, supplemented by retrospective historical data at enrolment, without any investigational interventions.
- Patient eligibility overview: The registry enrolls Wilson's disease patients attending participating WD specialist clinics who consent to data collection during their standard-of-care appointments; specific inclusion/exclusion criteria determine individual patient participation.
- Quick orientation before opening the registry record.
- Checking recruitment status, phase and sponsor at a glance.
- Connecting this trial to nearby guidelines, Drug Science and education.
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.
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- 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
Use the source registry for the full inclusion and exclusion criteria before discussing referral or enrolment.