Our Patient Registry project started in September of 2017 and the years expressed in the chart all run from September through August.
Up the left side of the chart are dollars needed or raised and across the bottom of the chart shows which year you are looking at. Each year shows the funds needed and the funds donated so far. There is a third bar in the first year showing that registry startup costs and operations have been paid. You can see that although Year 1 is not quite finished we were able to raise the cost of year 1 and all of the cost for year 2 that begins coming September. We now started raising funds for year 3. As we add more centers and increase patient enrollment the costs increase. Each patient enrolled in the registry will remain enrolled for the duration of the project and continue to be monitored.
The registry is not only important to current patients but is important because it will impact patients for generations. Our researchers and our donors are creating a legacy. We have been very fortunate to meet the needs of our first two years but we cannot become complacent considering the amount need to fund the remainder of the project.
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.