International Wilson's Disease Patient Registry (iWilson Registry)

What this Trial Is About

Researchers are conducting an international observational registry to study Wilson's Disease (WD) by collecting data from patients during their routine clinic visits, which occur approximately every 6 to 12 months. This registry aims to gather both retrospective data from diagnostic evaluations and past medical history, as well as prospective data during standard care visits. The study intends to better understand the natural history of WD, patient experiences, and treatment outcomes across a wide range of ages, including pediatric and elderly patients. The study does not involve any interventions or treatments but uses standardized tools to collect data on clinical practice and patient health. Patients will continue with their usual medical care while providing data on various aspects such as genetics, liver and neurological assessments, psychological evaluations, laboratory tests including urinary copper levels, physical examinations, and reports of adverse reactions. The SF-12 Health Survey will be used for patients aged 18 and older to assess quality of life at entry. Participants will be observed over a period of five years, with data collected at their routine visits without any additional study-related procedures. Researchers will analyze the collected information to describe the natural progression of treated WD and to identify clinical pathways, adherence to therapies, and long-term outcomes. The study is designed to include a broad and diverse patient population and will monitor safety and clinical changes through regular assessments documented by physicians.

International Wilson's Disease Patient Registry (iWilson Registry)