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FIRST WEBSITE ON PARKINSONíS 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.