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Clinical Research Learning Institute
PDF’s Clinical Research Learning Institute, now in its second year, is a three-day training that prepares people living with Parkinson’s to serve as advocates within the clinical research process.
Read below to learn more about the Clinical Research Learning Institute.
- Overview
- Why the Clinical Research Learning Institute?
- 2009 Application Process
- 2009 Planning Committee
- 2008 Graduate Profiles
Overview
The PDF Clinical Research Learning Institute is a once-a-year, multi-day training that prepares people with Parkinson’s disease to serve as advocates within the clinical research process.
The training includes educational sessions and break-out workshops led by leading clinical researchers, study coordinators, government and industry representatives and former Learning Institute graduates. The Learning Institute prepares its participants for specific activities including, but not limited to:
- increasing knowledge of clinical research and study participation within the PD community
- providing the perspective of a person with Parkinson's in the clinical research process (i.e., giving input to research sponsors and investigators on trial design, implementation, and evaluation)
- serving as formal representatives on clinical research review and advisory boards (including Institutional Review Boards (IRBs) and Data Safety Monitoring Boards (DSMBs))
After the Learning Institute, PDF offers ongoing educational and networking opportunities, where graduates regularly share knowledge and compare best practices.
Why the Clinical Research Learning Institute?
The strength of the Parkinson’s disease movement, like many other causes, rests primarily in the advocacy efforts of the people who live with or are affected by the disease. There is a critical role that people with PD can play in improving the clinical research process and moving forward the development of PD treatments, yet this perspective is all too often overlooked.
Most of us would probably like to see newer and better treatments for Parkinson’s, and quickly. But in the final step of the process that brings new treatments to market – clinical studies – there are problems that may be slowing down progress. For instance, Parkinson’s clinical trials historically have low participation (which causes delays in approval of new therapies) and very little “patient-perspective” built into the process.
With this in mind, the Clinical Research Learning Institute was created in 2008.
2009 Application Process
The application process for the 2009 Clinical Research Learning Institute is now closed. Successful applicants will be notified of their selection by August 3, 2009.
The 2009 Clinical Research Learning Institute will be held from Thursday, October 15 to Saturday, October 17 in New Jersey.
To be eligible for the Clinical Research Learning Institute, an applicant must be a person with Parkinson’s disease, living in either the US or Puerto Rico. For those who are selected to attend the Learning Institute, all expenses (registration, travel, hotel, accommodation, meals, etc.) will be covered by the Parkinson's Disease Foundation.
For more information about this program and/or questions about applying in the future, please contact Nicole Rabin, National Programs Coordinator at (800) 457-6676 or nrabin@pdf.org.
2009 Planning Committee
PDF thanks for the following individuals for their time, commitment and assistance in planning the Second Clinical Research Learning Institute.
Perry D. Cohen, Ph.D.
Maureen Cook, R.N.
Sister Mary C. Daniel, O.P., M.Ed., M.Th.
Linda Herman, M.L.S.
Christine Hunter, R.N., C.C.R.C.
Joohi Jimenez-Shahed, M.D.
Patricia Kavanagh, M.D., M.B.A.
Daniel J.B. Kiefer, J.D.
Linda M. Morgan, M.B.A., R.Ph.
Israel Robledo
Ann Wasson
Carolyn Weaver
Mickie D. Welsh, R.N., D.N.Sc.
Paula Wittekind, M. Ed.
Lin Zhang, M.D., Ph.D.
2008 Graduate Profiles
The first Learning Institute took place in July 2008. Its 25 graduates- also known as Clinical Research Liaisons - have done much to spread the word about Parkinson’s clinical studies.
