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The First PDF Clinical Research Learning Institute: Report from the Front

By Stanley Wertheimer, B.Ch.E., M.S., Ph.D.

I will not keep you hanging: PDF’s inaugural Clinical Research Learning Institute was a groundbreaking experience with the potential to significantly improve the clinical trials pro­cess for future Parkinson’s disease (PD) treatments.
 
Clinical research is the process of conducting studies in humans so that a disease or dysfunction can be treated in a new way.  Without such studies, there would be no new drugs, devices or therapies for Parkinson’s disease.  Yet people with PD historically have not participated in trials to the same extent as do people who live with other diseases.

Part of the reason for this may be that the voices of people with Parkinson’s are not adequately represented in the leadership of the clinical trials process.  In a bold attempt to prepare people with PD for this type of representation, the Parkinson’s Disease Foundation (PDF) held a three-day long Clinical Research Learning Institute in mid-July, in Glen Cove, NY.

From the start of the Learning Institute to its conclusion, one could feel the high energy from participants and faculty — all vibrant, committed and active people.  The participants — the 25 of us with PD — were from all parts of the US, including Puerto Rico.  Our group, men and women who ranged in age from 40 to late 70s, had lived with PD from one year to 30 years.  We were energized by the prospect of meeting our counterparts from other places and of learning more about clinical research.  The seven faculty members included researchers, administrators, ethicists and other players in the clinical research process.  They seemed genuinely excited about being able to interact with people with PD in a non-clinical setting. 

The Learning Institute presented in a series of short “courses,” a picture of all major features of the clinical trial process.  With topics such as “Clinical Research 101” and “Rights and Responsibilities of Clinical Research Participants,” it delved into the basics of the clinical research process and explained some of the moral and philosophical issues involved.  The instruction was generally at a high, but accessible level and instructors provided excellent supporting literature. 

By the end of the Learning Institute, friends had been made and many healthy arguments had taken place.  We, the participants, also succeeded in clarifying our mission in attending the Institute: to become informed in all aspects of clinical research so that we may better serve the entire PD community and promote the involvement of people with PD in clinical research.

I personally took away a commitment to try to get more people with PD involved in clinical research by the means that are open to me as one of the two facilitators of the Connecticut Parkinson Working Group (CPWG) and as editor of its newsletter.  CPWG is a statewide support/action group whose leadership consists entirely of people of Parkinson’s.  For years, we have been involved in recruiting people for trials and advising healthcare professionals on how to interact with people with Parkinson’s.  Since I now better understand the many ways in which people with PD can play a part, for example, as members of Institutional Review Boards (IRBs), subcommittees of the Food and Drug Administration (FDA), or even as part of the research team doing the trials — I can help disseminate this knowledge to my group and others. 

Through my work with CPWG, I have seen the valuable contributions that people with PD can make to an organization.  It was exciting to see that this participation was also at the heart of the Learning Institute. 

Stan Wertheimer is Professor Emeritus of Mathematics at Connecticut College.  In 2000, he co-founded the Connecticut Parkinson’s Working Group along with Jackie Dorwin.  He and Ms. Dorwin remain co-facilitators of the group and Dr. Wertheimer also edits the group's bi-monthly newsletter.  He resides in Mystic, CT.


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PDF wishes to thank the supporters of our inaugural Clinical Research Learning Institute: Solvay Pharmaceuticals; Novartis Pharmaceuticals, Inc.; Amicus Therapeutics, Inc.; Biotechnology Industry Organization; and Ceregene, Inc.


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The PDF Clinical Research Learning Institute is a multi-day training that prepares people with Parkinson’s to be players in the clinical research process.   To learn more, please contact PDF at (800) 457-6676 or info@pdf.org.