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Ending Parkinson's

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40 People with Parkinsonís Graduate from PDF's Research Advocacy Training Program

Last week, more than forty people living with Parkinson’s disease (PD) from across the US participated in the Parkinson’s Disease Foundation’s (PDF) Second Clinical Research Learning Institute.  Held in Florham Park, New Jersey, the novel three-day program prepares participants to be part of the clinical research process – the stage of treatment development that brings new, and much-needed, therapies for Parkinson’s from “bench to bedside.”

PDF’s Learning Institute, which was launched in 2008, is based on the premise that all too often, the perspectives and experiences of people with Parkinson’s are excluded from the decision-making that advances new therapies.  This includes not just participation in trials – where it is estimated that less than one percent of the one million people in the US living with Parkinson’s currently participate at all – but also active roles in advising investigators on clinical trial implementation and evaluation.

To prepare for new roles as clinical research advocates, this year’s participants – a diverse group of business leaders, scientists and educators hailing from 24 states – attended educational sessions led by national experts, including clinical researchers, study coordinators, and industry representatives.  The courses focused on such topics as the clinical research process and current therapies development, bioethics, analysis and evaluation of clinical research and the protection of clinical study participants. 

Advocates have returned to their home communities ready to engage in a range of activities that include educating the broader community about the importance of clinical research and study participation through support group and conference presentations and serving on clinical study oversight and advisory committees.  All graduates will also take part in PDF’s ongoing educational and networking opportunities, where they can regularly share information and compare best practices.

As participant Diane Cook, said, “The Learning Institute curriculum provided an interactive and effective learning environment, where I could debate issues critical to treatment development with other people with Parkinson’s whose experience with the disease has been very different from mine.  I think we are all ready to share our knowledge – both to increase the community’s understanding about clinical trials and to hopefully affect change in the way that Parkinson’s clinical research is conducted.”

Executive Director Robin Elliott, commented on the training, “The Parkinson’s Disease Foundation believes that inclusion of the perspective and experiences of people with Parkinson’s has the potential to benefit the clinical research process and therapies development.   We are committed to providing the tools and resources necessary to make this happen – in the hope that the Clinical Research Learning Institute provides the foundation for these motivated consumers to become engaged and involved in a process that directly impacts their current quality of life and strives to find a cure for this debilitating disease.”

About the Parkinson’s Disease Foundation
The Parkinson’s Disease Foundation (PDF) is a leading national presence in Parkinson’s disease research, education and public advocacy. We are working for the nearly one million people in the US who live with Parkinson’s disease (PD) by funding promising scientific research to find the causes of and a cure for Parkinson's while supporting people with Parkinson’s, their families and caregivers through educational programs and support services. Since its founding in 1957, PDF has funded over $80 million worth of scientific research in Parkinson’s disease, supporting the work of leading scientists throughout the world and has dedicated over $30 million to support people with Parkinson’s and their families and caregivers through our educational and advocacy programs.

At the heart of PDF's work is the participation of people with Parkinson's.  Whether it is through our People with Parkinson's Advisory Council, which advises PDF on all aspects of its work, or the Clinical Research Learning Institute, which trains people with PD to play a part in clinical research - the perspective of people living with Parkinson's ensures that PDF’s work is on target and meets the needs of the community.


Source Date: Oct 21 2009