Washington Parkinson's Disease Registry
Just say WPDR!!!
We are excited to announce that the Washington Parkinson's Disease
Registry (WPDR) will begin operations in May 2007. The idea of a
statewide database of individuals with Parkinson's 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's community came to
fruition.
The following, in a question-answer format, will help you gain a
better understanding of the Washington Parkinson's 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 (e.g., lab results)
to more complex information such as characteristics of an individual's
illness (e.g., presence of tremor in a Parkinson's disease patient).
What is the purpose of this Registry?
The purpose of the WPDR is to create a list of individuals
with Parkinson's disease interested in participating in research
studies. The Registry can then be used to link up Parkinson's disease
patients interested in research participation and investigators studying
Parkinson's disease. This will improve patient access to ongoing
and future research studies and speed up recruitment of subjects
for investigators studying Parkinson's disease.
Who is eligible to participate?
Anyone with a known diagnosis of Parkinson's 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's 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's disease
interested in research studies. If you know other people with a
diagnosis of Parkinson's disease, please feel free to spread the
word. If you are involved in a Parkinson's 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's community in Washington State.
What if I want to donate to the Registry? Who do I
contact?
Please do not send donations directly to the Registry.
Send donations to Parkinson's Resource Center of Spokane, designating
that your donation is for the Registry, at 910 W.
5th, Suite 256, Spokane, WA 99204. Telephone number - (509) 473-2490.
Click here to print a donation form or donate on-line.
Who do I contact to participate in the Registry?
WPDR’s contact information is as follows:
Washington Parkinson's Disease Registry
VA Puget Sound Health Care System
1660 South Columbian Way (S-127)
Seattle, WA 98108
Telephone Number: (206) 277-6080; or
1-800-329-8387 ext. 66080
Fax: (206) 764-2802
Email:wpdr@u.washington.edu
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