Washington Parkinson Disease Registry
We are excited to announce that the Washington Parkinson Disease Registry (WPDR) will begin operations in May 2007. The idea of a State-wide database of individuals with Parkinson disease interested in research studies has existed for some time. It wasn't until the collaborative efforts and financial support from the Washington Chapter of the APDA, Northwest Collaborative Care, Northwest Parkinson's Foundation, and the University of Washington Department of Neurology that this exciting resource for the Parkinson community came to fruition.
The following, in a question-answer format, will help you gain a better understanding of the Washington Parkinson Disease Registry. Remember, just say WPDR!!!
What is a registry?
A registry is a term used to describe a database (or computerized list) of information collected over a period of time. The types of information can range from simple data (example-lab results) to more complex information such as characteristics of an individual's illness (example- presence of tremor in a Parkinson disease patient).
What is the purpose of this Registry?
The purpose of the WPDR is to create a list of individuals with Parkinson disease interested in participating in research studies. The Registry can then be used to link up Parkinson disease patients interested in research participation and investigators studying Parkinson disease. This will improve patient access to ongoing and future research studies and speed up recruitment of subjects for investigators studying Parkinson disease.
Who is eligible to participate?
Anyone with a known diagnosis of Parkinson disease is invited to participate.
What kinds of information will you obtain?
If, after a brief screening interview, WPDR determines that you qualify for the Registry, then the Registry coordinators will ask you for basic biographical information (name and contact information) and details about your Parkinson disease (such as when and how it started and which medications you have tried).
Is the information I give confidential?
All information provided to the Registry is completely confidential. Privacy and confidentiality of your health information is WPDR’s highest priority.
What happens after I'm enrolled in the Registry?
Once you are enrolled in the WPDR, the Registry staff will contact you to inform you of studies for which you might qualify. At that point, you can then decide whether to contact the study personnel for further information. Your personal information will never be released directly to investigators.
Is there any cost to participate?
There is no cost to participate. You also will not receive compensation for participating in the Registry.
What if I decide to withdraw from the Registry- Is this okay?
You can withdraw from the Registry at any time. All we need is a written statement from you indicating your decision to withdraw from the Registry. Your personal information will then be deleted from the Registry.
What can I do to help spread the word of the Registry?
WPDR’s goal is to attract individuals with Parkinson disease interested in research studies. If you know other people with a diagnosis of Parkinson disease, please feel free to spread the word. If you are involved in a Parkinson support group, you can bring up the Registry and see if other members in your group are also interested. You can also arrange for one of the Registry representatives to attend one of your meetings to provide further information regarding the Registry. We hope that "WPDR" becomes a familiar word in the Parkinson community in Washington State.
What if I want to donate to the Registry- who do I contact?
Please contact the Washington Chapter of the APDA for more details. Please do not send donations directly to the Registry.
Who do I contact to participate in the Registry?
WPDR’s contact information is as follows:
Washington Parkinson Disease Registry
VA Puget Sound Health Care System
1660 South Columbian Way (S-127)
Seattle, WA 98108
Telephone Number: (206) 277-6080; 1-800-329-8387 ext. 66080
Fax: (206) 764-2802
Email: wpdr@u.washington.edu