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The Advocate Report: Illinois
It is because of individuals who have stepped forward to take part in clinical research studies that any Parkinson’s disease (PD) medications are available today. This is the sentiment of the graduates of the Parkinson’s Disease Foundation (PDF) Clinical Research Learning Institute, including Frances Waldynski, a former special education teacher who hails from the suburbs of Chicago, IL.
So, this past April, a group of Learning Institute graduates, including Ms. Waldynski, decided to recognize “partners in progress” — individuals from the Chicago area who have participated in trials. The graduates joined forces with local doctors, clinical trial coordinators and PDF staff, to organize an educational forum entitled, Partners in Progress: The Essential Role that People with Parkinson's Play in Clinical Research.
In addition to honoring research participants, the event was designed to increase participation by people with Parkinson’s in the cutting-edge studies taking place in the area. As the graduates note, a shortage of clinical research participants is a key factor in the delay of testing and approval of new Parkinson’s medications.
The first session featured research teams from three nearby medical centers, including Rush University Medical Center (a PDF-funded research program), represented by Christopher G. Goetz, M.D.; Northwestern University, represented by Tanya Simuni, M.D.; and University of Chicago Medical Center, represented by Un Jung Kang, M.D. Each team spoke about recent findings and opportunities for people with PD to get involved. Next, a panel of people with PD spoke about their personal experiences volunteering for trials.
Ms. Waldynski, who has participated in over 13 trials herself, said, “I think this event raised awareness of the breadth of clinical trials available. Many people think that participating in a clinical trial means taking an experimental medication for a terminal illness, not for a chronic disease like Parkinson’s. But there are so many trials to test important new Parkinson’s drugs and study its symptoms.”
As the event came to a close, clinical trial participants were singled out with a gift of tulips. As one Learning Institute graduate noted, “I stood by the door and observed the 200 or more people in the room — those living at all stages of Parkinson’s, and their family members. It reminded me of why we planned this program — to help to minimize disability and improve quality of life for people with Parkinson’s, so they can be with their families and friends.”
Learn more about PDF’s Clinical Research Learning Institute, soon to be accepting applications for Fall 2010.