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Press release about  a new, much needed web site:

FROM: Parkinson’s Disease Foundation
FOR IMMEDIATE RELEASE

FIRST WEBSITE ON PARKINSON’S CLINICAL TRIALS UNVEILED

Collaboration between Voluntary Disease Groups, Industry and Government
Marks Launch of Website Devoted to Parkinson’s Clinical Research

New York, November 8, 2004 – A new website dedicated to Parkinson’s
clinical trials is being launched today, marking a novel collaboration
between voluntary patient groups, private foundations, government and
industry, www.PDtrials.org.

The website is being launched under the banner of a public awareness
initiative known as Advancing Parkinson’s Therapies (APT), a
community-wide project designed to accelerate the development of new
treatments for Parkinson’s by increasing awareness and participation of
Parkinson’s patients in clinical research. APT is led by seven leading
Parkinson’s groups, in collaboration with the National Institute of
Neurological Disorders and Stroke (NINDS). The patient-centered website
will act as a central gateway for information on industry and government
sponsored clinical trials.

The concept of APT grew from patients themselves. An online grassroots
network of people with Parkinson's known as the Parkinson's Pipeline
Project highlighted concerns about a growing disparity between the number
of new therapies that will soon be moving into clinical trials and the
number of Parkinson’s patients who are volunteering to take part in them.
This disparity could result in severe delays in the availability of new
treatments that offer relief for the nearly one million Americans who
suffer from Parkinson’s.  Currently an estimated 5,000 people with
Parkinson’s are participating in clinical research – far short of the
10,000-15,000 participants that researchers anticipate they will need to
efficiently conduct clinical studies over the next two to three years.

The new website will work to address this issue by improving access to
information on Parkinson’s clinical trials and by providing a tool for
patient and physician audiences to identify trials that are actively
seeking patients. The site will also help to educate patient communities
on the value of clinical research.

Key features of the website include:
•       Providing a one-stop gateway for patient and medical communities to
access information about Parkinson’s clinical research.
•       Helping potential participants identify trials that are open by type
and by geographic location (e.g. within 50 miles of the patient’s zip
code).
•       Encouraging visitors to sign-up to receive e-mail updates when new
trials are added.
•       Making available print materials including a new patient education
brochure: Parkinson’s Clinical Research: A guide to understanding how you
can play a part in moving Parkinson’s research forward that can be
ordered either online or through a recorded campaign phone line (888)
823-8889.

The following organizations have pledged to unite to support the effort:
the American Parkinson Disease Association, the Michael J. Fox Foundation
for Parkinson’s Research, the National Parkinson Foundation, the
Parkinson’s Action Network, the Parkinson Alliance and WE MOVE. The
coalition is being coordinated by and staffed by the Parkinson’s Disease
Foundation.

Contact:
Christiana Evers, Director of Communications: [log in to unmask]
Ronnie Todaro, Director of APT: [log in to unmask]
Ph: (800) 457-6676
Fax: (212) 923-4778
www.pdf.org

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