Since PDF’s Parkinson’s Advocates in Research (PAIR) program was created in 2008, this program — which prepares lay leaders to play advocacy roles in research — has graduated a total of 180 educated individuals through its in-person trainings. The program is also providing an expanded list of ways in which aspiring volunteers can take part. Find out more about how Research Advocates advance research and help to speed new treatments.
They 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.
They 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. As he told News & Review, “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.
They Educate Communities
PDF Research Advocate Bernie Snead of Myrtle Beach, SC, believes that one of the simplest ways to advance research is to let the community know what they can do to help. And one key place for sharing the information is support groups. In collaboration with the Parkinson Association of the Carolinas, Mr. Snead aims to bring the latest information to 46 support groups in North and South Carolina. To date, he has reached 13 of them. He interweaves PDF’s Getting Involved in Parkinson’s Research presentation with his own personal experiences in volunteering for trials. He tells groups about the studies that are taking place in their communities, and suggests questions that people should ask when they are thinking about volunteering. Following his presentations, the number of support group members who stated that they are likely to participate in a clinical trial increased by 50 percent!