Clinical Research Learning Institute

The Clinical Research Learning Institute provides people with Parkinson’s with the knowledge and skills necessary to be effective representatives within the clinical research enterprise.

The 2008 Institute will take place from Thursday, July 10 through Saturday, July 12 in Glen Cove [Long Island], NY.

Please click below to read more about the Learning Institute:

* Why a Clinical Research Learning Institute for People with Parkinson’s?
* What is the Clinical Research Learning Institute?
* Interested in Participating in the Clinical Research Learning Institute?
* Clinical Research Learning Institute Planning Committee Members

Why a Clinical Research Learning Institute for People with Parkinson’s?

Creating a place at the table for people with Parkinson’s disease (PD) to share their viewpoints and experience is critical to moving the development of treatments for PD forward — yet it is all too often overlooked.

PDF recognizes the important role that people with PD can play in the clinical research process and in 2008, launched the Clinical Research Learning Institute. The goal of the Learning Institute is to provide people with Parkinson’s with the knowledge and skills necessary to be effective representatives within the clinical research enterprise.

The new Learning Institute is part of PDF’s Advancing Parkinson’s Therapies (APT) initiative, a multi-pronged program that addresses non-science barriers to the acceleration of PD therapies and treatments.

What is the Clinical Research Learning Institute?

The PDF Clinical Research Learning Institute is a multi-day training that prepares people with Parkinson’s disease for such activities as: educating the broader community about the importance of clinical research; providing research sponsors and investigators with input on trial design, implementation, and evaluation and serving on Institutional Review Boards (IRBs) and Data Monitoring Safety Boards (DMSBs).

Experts from all sectors of the clinical research enterprise — including researchers, trial coordinators, and government and industry representatives serve as faculty for the Clinical Research Learning Institute. Learning Institute participants will have the opportunity to engage in continuing education activities and ongoing communications with other graduates. The Clinical Research Learning Institute takes place once per year and participants are selected through a formal application process.

Interested in Participating in the Clinical Research Learning Institute?

The inaugural Clinical Research Learning Institute will take place Thursday, July 10 through Saturday, July 12 in Glen Cove, NY.

If you are a person with Parkinson's who is interested in participating in the Clinical Research Learning Institute, please contact Nicole Rabin, National Programs Coordinator at (800) 457-6676 or nrabin@pdf.org.

You may also access the 2008 application by clicking here. Applications are being accepted through April 18, 2008.


Clinical Research Learning Institute Planning Committee Members

The Parkinson’s Disease Foundation thanks the following individuals for their participation on the inaugural Clinical Research Learning Institute Planning Committee:

Aviva Abosch, M.D., Ph.D.
Ken Cater
Maureen Cook, R.N.
Wilson DeCamp, Ph.D.
David Eger, Ph.D.
Irene Hegeman Richard, M.D.
Christine Hunter, R.N., C.C.R.C.
Joohi Jimenez-Shahed, M.D.
Patricia Kavanagh, M.D., M.B.A.
Jo-Anne Lazarus, Ph.D.
Michael O’Leary
Joanna T. Steichen, M.S.W.
Carolyn Stephenson
Mickie D.Welsh, R.N., D.N.Sc.
Peggy Willocks, M.Ed.
Lin Zhang, M.D., Ph.D.

The Clinical Research Learning Institute will provide an important resource for the PD community. It will formalize the lessons learned by the Parkinson Pipeline Project over the past 7 years to focus attention on the 15 year pipeline required to translate investments in research into therapies for patients. Recruiting and training advocates to provide the patient perspective to the clinical research process will help us to expand our efforts to offer regulatory consultation to sponsors of clinical trials from the patient perspective, just like we already do for FDA. Participation of the graduates of this Institutes at local levels as "Research Partners" will fill very important roles to facilitate clinical trials, including education and outreach to ccommunity doctors, consultation to IRB's on PD issues, and counseling and support for participant's in clinical trials. Our experience in the Pipeline Project has been that each of us benefits personally from taking action and we take pride in our too slow by steady progress toward accelerating the introduction of new therapies. If you are interested in helping yourself while helping the cause of today's PWP, apply for the inaugural Clinical Research Learning Innstitute.

Perry Cohen
Director, Parkinson Pipeline Project

"The missing ingredient in the development of new therapies is the voice of the patient"

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this is a wonderful opportunity - thanks to PDF!!