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Spotlight on Research Supported by PDF

Parkinson Study Group Project

In addition to funding several top Parkinson's research centers and more than 20 individual investigators throughout the world, PDF makes a yearly grant to support the work of the Parkinson Study Group (PSG) in Rochester, NY. This award, PDF's first Advancing Parkinson's Treatments Innovations Grant, funds new and innovative programs that facilitate the clinical research process so that treatments and therapies move at an accelerated rate from "bench to bedside."

Founded in 1985, PSG is a non-profit, cooperative group of Parkinson's disease experts from medical centers in the US and Canada who are dedicated to improving treatment for people living with Parkinson's disease, primarily by coordinating and managing clinical trials of promising new treatments.

The program, now in its fourth year, advances clinical research in several ways. One of these has been to foster efficiencies in Parkinson's database management through funding the inventory, assessment and integration of PD study databases among all the PSG research projects. The focus of this integration has been to take the databases of PSG studies that were sponsored by the National Institutes of Health (NIH) and other organizations over the last 20 years and put them into a format that is usable for retrospective analyses. These retrospective analyses or "data mining" efforts allow the matchless resource that is represented by a large clinical trial database to be used for secondary analyses that go far beyond the purpose of the original trials.

PDF has taken the lead in funding another data-building initiative by supporting PSG's FOUND (Follow-up of Persons with Neurologic Diseases) project, run by Dr. Carolyn Tanner at The Parkinson's Institute in Sunnyvale, CA. The primary objective of this study is to gather long-term data on Parkinson's disease progression, treatment response, complications and outcomes. The FOUND study acquires this information by following up with clinical trial participants after the end of a trial via questionnaires. Studies such as this can also help clinical investigators gather information about non-motor aspects of PD, which are often most troublesome to people living with Parkinson's.

In addition to supporting these programs, PDF has awarded PSG funds to support a Mentored Clinical Research Award for young clinical researchers to encourage careers in Parkinson's disease patient-oriented research. The impact of the award is already apparent: the first recipient of the Mentored Clinical Research Award is now overseeing Parkinson's clinical trials at the National Institute of Neurological Disorders and Stroke, the world's leading source of funding for research into Parkinson's and other brain disorders!

PDF has also provided resources to PSG for training new investigators who may not have had experience in developing and managing clinical trials. This training focuses on the key areas of good clinical practices and ethics in research; standardized training on the Unified Parkinson's Disease Rating Scale; standardized training on "non-motor" aspects of Parkinson's, including mood and cognition; and use of electronic data capture systems. The main objective is to train researchers who are able to conduct clinical trials, with the intent of widening the pool of qualified PD investigators and thereby accelerating the pace of clinical studies and development of treatments.

Since 2002, PDF has committed nearly $1 million dollars to support the important work of PSG. In FY 2007, we have awarded PSG $200,000.