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 the 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.
The total time commitment for a visit will be about 3 hours.
The Wilson Disease Association has offered an annual $50 stipend to make it easier for you to attend these longer visits. You may be eligible to participate if you meet the following criteria:
- Male or female, of any age.
- Have a diagnosis of Wilson Disease.
- Are undergoing an evaluation for WD, including individuals undergoing family screening.