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Diseases of the Digestive System - Liver | Diseases of the Eye | Diseases of the Nervous System

Wilson Disease Registry

What is the purpose of this trial?

Patients are being recruited for a multi-center registry study for patients with Wilson Disease.

This study is being sponsored by the Wilson Disease Association.

Currently there is no established registry for Wilson disease in the US. Establishing a registry will help us to understand the epidemiology and natural history of Wilson disease. Our hope is that it will enable us to determine best practices for diagnosis and treatment and support new initiatives for research and patient care.

If you choose to participate you will be seen at least every 12 months at the time of your routine visits to clinic for 5 years. During your visits you will have some blood work, neurological and psychiatric assessments. These will allow us to assess the whole spectrum of clinical symptoms in Wilson Disease.

Total time commitment for a visit will be about 3 hours.

Contact Information

For more information about this study, including how to volunteer, contact Ayse Kubra Coskun

Help Us Discover!

You can help our team find trials you might be eligible for by creating a volunteer profile in MyChart. To get started, create a volunteer profile, or contact, or call 877.978.8343 for more information.

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