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Engaging Patients in Clinical Research: PDF Parkinson's Advocates in Research

Since the Parkinson’s Disease Foundation (PDF) began its Parkinson’s Advocates in Research (PAIR) program in 2008, we have prepared 180 people with Parkinson’s and care partners from 38 states to play advocacy roles in research. Each person has completed a three-day PDF training where they very often are learning from PSG members – such as Joohi Jimenez-Shahed, M.D. from Baylor College of Medicine and Cathi Thomas, R.N., M.S. from Boston University Medical Campus – about the science of Parkinson’s and the development of new treatments. "PAIR empowers people with PD and care partners to engage within the research community. Ultimately, these informed grassroots voices, with the support of the scientific and research community, will be the most impactful in effecting change." states Dr. Jimenez-Shahed.

What are these individuals – whom we call PDF Research Advocates – doing to speed new treatments? Here are just a few examples of how they could help your work:

Guide Research

Israel Robledo of Midland, TX, and Cliff Ishmael of Bel Air, MD, are helping to guide research through their involvement with the Patient-Centered Outcomes Research Institute (PCORI) — a federal program that funds research to improve health care. This past spring, Mr. Robledo served as a PCORI grant reviewer, critiquing five projects seeking PCORI funding. His feedback, on the importance of the projects and their involvement of patients, helped to decide whether they received funding. Meanwhile, Mr. Ishmael is advising a team at the University of Maryland, led by Lisa Shulman, M.D., that is planning a study on how to improve care for people with neurological diseases, including PD. The team plans to seek PCORI funding, and has asked for Mr. Ishmael’s expertise to ensure that their study meets the needs of people with PD.

Fill Gaps and Overcome Obstacles

Steve DeWitte of New Preston, CT, is helping to overcome a seemingly simple barrier: getting volunteers to the research studies that interest them. “When I ask people with Parkinson’s why they are not involved in research studies, many reply, ‘Because I have no transportation.’” His solution was launching the Clinical Trial Transportation Program (CTTP). By partnering with Beth Israel Deaconess Medical Center in Boston, MA, CTTP has helped 26 volunteers to participate in research studies by transporting them by van from Connecticut to Boston. His initiative has inspired fellow PDF Research Advocates Gordie Guist and Cam Weaver to expand the program to Maine.

Educate Communities

PDF Research Advocates Dan and Pat Baker, of Portland, OR, are partnering with Jay Nutt, M.D. at the Oregon Health & Science University (OHSU) to inform their communities about local Parkinson’s disease research studies. The former educators, who have been married for 42 years and touched by Parkinson’s disease since Dan’s diagnosis in 2002, said of their new role, “We hope that our collaboration with Dr. Nutt and his team is just the beginning of an era in which the community is involved in every step of research and treatment development for Parkinson’s disease.” Dr. Nutt added, “It will be invaluable for OHSU to have knowledgeable community members join our team of researchers, doctors and other professionals, in order to prioritize Parkinson’s disease research and improve studies. The presence of the Bakers and their 180 colleague Research Advocates across the country is certainly a crucial step in our goal of finding new treatments for people living with Parkinson’s disease.”

If you would like to learn more about partnering with PDF Research Advocates, please contact Ronnie Todaro, Director of National Programs, at (800) 457-6676 or You can learn more about the Parkinson’s Advocates in Research program by visiting

Source Date: Oct 25 2012
Source Publication: Parkinson Study Group
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