International Wilson's Disease Patient Registry (iWilson Registry)

NCT05239858 · tracked via the Priya Life Science UK tracker

Sponsor

Orphalan

Phase

Observational

Started

2022-06-29

Last updated

2026-08-11

Condition(s) studied

Wilson's Disease

Study 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

Sex

ALL

Min age

12 Years

Max age

—

Healthy volunteers

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

Primary outcome measure(s)

Describe the natural history of treated WD — 5 years
Describe the natural history of treated WD and to explore the clinical phenotype, geographic, ethnic and gender influences on the course of the condition.

Trial sites (16)

Facility	City	Region	Status
University Hospital Leuven	Leuven	Belgium	Recruiting
Hospices Civils de Lyon	Bron	Auvergne-Rhône-Alpes	Recruiting
HF Adolphe de Rothschild	Paris	Île-de-France Region	Recruiting
Charite-Univeritatsmedizin Berlin Hospital	Berlin	Germany	Recruiting
Universitatsklinikum Dusseldorf	Düsseldorf	Germany	Recruiting
Hannover Medical School (MHH)	Hanover	Germany	Recruiting
Universitätsklinikum Leipzig	Leipzig	Germany	Recruiting
Institute of Psychiatry and Neurology	Warsaw	Poland	Recruiting
The Children's Memorial Health Institute	Warsaw	Poland	Recruiting
King Faisal Specialist Hospital in Riyadh	Riyāḑ	Riyadh Region	Recruiting
Hospital Universitario GC Dr Negrín	Las Palmas de Gran Canaria	Canary Islands	Recruiting
University Hospital Clínic de Barcelona, C. de Villarroel	Barcelona	Spain	Recruiting
Hospital Universitario Virgen del Rocío	Seville	Spain	Recruiting
Hospital Universitario Y Politécnico La Fe	Valencia	Spain	Recruiting
Leeds Teaching Hospitals NHS Trust	Leeds	United Kingdom	Recruiting
Royal Free Hospital	London	United Kingdom	Recruiting

Other trials for the same condition

A Phase I/II Study of VTX-801 in Adult Patients With Wilson's Disease Active, not recruiting

Official registry record

This page summarises publicly available registry data for informational purposes — not medical advice. Eligibility is determined by each study team; patients should discuss participation with their clinician.

View NCT05239858 on ClinicalTrials.gov ↗ ← All trials in the UK