Wilson Disease Registry
- Study HIC#:1609018429REG
- Last Updated:07/15/2021
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.
- Start Date11/16/2017
- End Date10/01/2022
Trial Purpose and Description
|To establish a multi-center registry for patients with Wilson Disease. The registry aims to capture data on disease phenotype, genotype and patient treatment and clinical outcomes. The registry will utilize OnCore for data entry and storage. In concert with these efforts, the database will serve as a site for data coordination for a serum, DNA and tissue repository at several centers in the US in collaboration with investigators in the UK|
Male or female, of any age
- Have a diagnosis of Wilson Disease
- Are undergoing an evaluation for WD, including individuals undergoing family screening
To discuss possible participation please contact the Yale New-Haven Hospital, Transplant Research Department by calling on 203-737-3422 or emailing firstname.lastname@example.org.