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.


Gender: Both


Wilson Disease Foundation

Start Date: 11/16/2017

End Date: 10/01/2022

Last Updated: 02/22/2018

Study HIC#: 1609018429REG

Get Involved

For more information about this study, contact:
Keerthana Nalamada
+1 203-737-3422
keerthana.nalamada@yale.edu

If you would prefer to contact a member of the Help us Discover team about this trial and other similar trials, please email helpusdiscover@yale.edu or call 1-877-978-8348.

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