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P.D.F. Gears Up to Promote Parkinson's Clinical Trials

The Parkinsonís Disease Foundation (PDF) is taking the lead in enhancing the awareness of the Parkinsonís community of the importance of clinical trials of new drugs and treatments that may Ė if they prove safe and effective - ease the suffering of up to a million Americans with Parkinsonís.

Clinical trials provide the framework for the approval process of the Food and Drug Administration (FDA), which is required before a new pharmaceutical goes on the market. A critical fact is that, although dozens of new compounds have been developed on the ďresearch benchĒ by scientists, not a single new Parkinsonís medication has been introduced to the market during the past five years.

PDF has drawn up plans to stimulate the awareness of the Parkinsonís community of the vital importance for people with Parkinsonís (PWPs) of clinical trials. PWPs need to be educated and informed about the possibility of participation. They need to be encouraged to find out what is involved, and where appropriate, sign on to participate in one of the more than 50 clinical trials now going on, or one of the important new trials being scheduled for coming months. Among PDF steps taken so far:

New Website with Clinical Trials Information

If you are interested in learning what trials are already under way, you can get up-to-date information by logging on to a new PDF website at www.pdpipeline.org. The site lists current and planned trials. Insofar as we have the information, it tells the availability of each trial for participation by PWPs, and spells out the eligibility criteria for each trial.

New Brochure

We are making available a new brochure that describes the importance of clinical trials and discusses the factors to be considered by a PWP in deciding whether or not to participate in a trial.

Cooperation with the National Institutes of Health (NIH)

NIH, through the National Institute of Neurological Disease and Stroke (NINDS), has just begun recruiting patients for the largest ever set of clinical trials of neuroprotective substances which may be effective in PD. These trials, collectively called Net-PD, are being conducted at 42 separate sites throughout the United States. PDF is working with NINDS to increase awareness of the availability of places in these trials for appropriate PWPs. If you would like more information about the locations of these centers, call the NINDS toll-free information number at (800) 352 9424.

Collaboration with Other Parkinsonís Organizations

PDF has invited other key Parkinsonís organizations to join in the effort to promote interest in clinical trials. Among those organizations to which we have issued invitations are the American Parkinson Disease Assn. (APDA) and its chapters; the National Parkinson Foundation (NPF) and its chapters; and the Michael J. Fox Foundation for Parkinsonís Research.

Preparation of Material

PDF is developing plans for the production of a variety of types of informational material describing the importance of clinical trials to the health and welfare of PWPs. Among the types of material are posters, electronic and print material, leaflets, charts for doctorsí offices, and lists of support groups and other elements of the Parkinsonís community.

Our effort is in its beginning stages. We plan to keep visitors to our website fully informed of developments in this campaign as we move forward.

Source Date: Jun 26 2003