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PDF Launches Clinical Research Learning Institute

The Parkinson’s Disease Foundation (PDF) is pleased to announce the creation of a new clinical research learning institute, designed specifically for interested and talented lay members of the Parkinson’s community. The institute will provide participants the tools they need to serve as leaders and knowledgeable patient representatives within clinical research — advocating for the role of the patient in the process that brings medications and medical devices from research to market.

Through several days of training sessions, the institute will prepare its graduates to take part in such activities as educating other people with Parkinson’s about the importance of clinical research; serving on Institutional Review Boards (IRBs) and Data Monitoring Safety Boards; and providing research sponsors and investigators with input on trial design, implementation, and evaluation. Leaders from all sectors of the clinical research enterprise, such as researchers and clinical trial coordinators, will be invited to serve on the institute’s faculty. The inaugural training is planned for the summer 2008 and its participants will be chosen by PDF through a formal application process.

The idea for the institute came out of a roundtable discussion that PDF sponsored in January 2007, entitled: “Building Patient Trust: A New Era of Parkinson’s Research Rights and Responsibilities.” The meeting, which included several people with PD, clinical trial experts, as well as representatives from industry, government and voluntary organizations, focused on the challenge of how to engage members of the PD community as active advisors in the clinical research process, empowering people beyond the more passive role of trial participant.

One of the most provocative sessions of the meeting was a presentation by a representative of the National Breast Cancer Coalition (NBCC) on NBCC’s own educational program. There was wide agreement that this program could be a model for a similar venture in the PD community. Roundtable participants felt that the “patient perspective” that is central to the NBCC program could be of great benefit to the clinical research community in Parkinson’s and would help accelerate the development of new PD therapies and treatments.

“Creating a place at the table for people with Parkinson’s to share their viewpoints, experience, and ideas is critical to facilitating treatment development — yet it is all too often overlooked,” states Robin Elliott, Executive Director of PDF. “A formal clinical research learning institute will provide this essential group of stakeholders with knowledge and a skill set that will make patient participation in the clinical research process all the more rich and valuable.”

The new institute will be part of PDF’s Advancing Parkinson’s Therapies (APT) initiative, which is directed by Veronica Todaro. APT is a multi-pronged project that is aimed at addressing non-science barriers to the acceleration of PD therapies and treatments.

Seed funding for the new venture will be provided through PDF’s general budget. Funding to sustain and develop it will be sought from outside sources.

For more information, contact PDF at (800) 457-6676 or

This article was originally printed in PDF's Winter 2007/2008 newsletter.To read the newsletter in its entirely, please visit

Source Date: Dec 28 2007