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.
Wilson Disease Foundation
Start Date: 11/16/2017
End Date: 10/01/2022
Last Updated: 02/22/2018
Study HIC#: 1609018429REG