WHAT IS THE PARKINSON STUDY GROUP (PSG)?

The Parkinson Study Group (PSG) is a non-profit group of physicians and other health care providers from medical centers in the United States and Canada, experienced in the care of Parkinson patients and dedicated to clinical research of Parkinson's Disease. The PSG was formed in 1986, prompted by the recognition that clinical research in Parkinson's Disease (PD) required the participation of large numbers of research patients (subjects) under the cooperative care of skilled and experienced research physicians. The PSG aims to advance knowledge about the cause(s), disease progression and treatment of PD and related disorders. The PSG is committed to: open communication within the scientific community; ensuring research is fully reviewed by other health care providers prior to publication to make certain that all research results (good and bad) are available to the public; revealing all potential conflicts of interest of the group and each PSG member and; democratic governance of its organizations and activities.

What Makes the PSG Unique? The PSG has carried out cooperative therapeutic research since 1986, beginning with the NIH-sponsored DATATOP (Deprenyl and Tocopheral Antioxidative Therapy of Parkinsonism) clinical trial. Since then we have carried out more than 35 multi-center trials examining the symptomatic and neuroprotective effects of experimental interventions in Parkinson's disease. The PSG has partnered with numerous pharmaceutical companies and The National Institutes of Health (NIH) in bringing new drugs for Parkinson's disease to the market including pramipexole, entacapone, rotigotine and rasagiline. Since our inception, we have actively published all of our research efforts in internationally recognized peer-reviewed journals in an effort to make all of our research progress in PD and related disorders available to the public. Our publication list currently includes over 200 abstracts and journal articles.

Where is the PSG and its Members Located? PSG CENTRAL OFFICE The PSG central operating office is located at the institution of the chair (Karl Kieburtz, MD, MPH) of the PSG Executive Committee which is currently at: University of Rochester 1351 Mt. Hope Ave, Suite 223 Rochester, NY 14620 PSG PHYSICIANS (INVESTIGATORS) AND OTHER HEALTH CARE PROVIDERS (COORDINATORS) NETWORK The core resource of the PSG is a network of experienced investigators, coordinators and consultants from academic/research institutions in the United States and Canada. Membership in the PSG is based on active participation in PSG clinical trials or through active participation on committees of the PSG. The PSG now includes more than 350 active investigators, coordinators and scientists from approximately 85 PSG sites located throughout the United States and Canada. Research is conducted at all of these sites in an effort to find new treatments (e.g., medications, surgical procedures) for PD, as well as new ways to diagnose PD and related neurological disorders. Site investigators and coordinators are selected for participation in PSG trials on the basis of their experience and performance in conducting clinical research studies in Parkinson's disease.

How is the PSG Organized? The PSG is governed by a constitution and bylaws and an elected executive committee which is primarily responsible for the direction and oversight of its research projects and activities. The PSG Executive Committee currently includes: Karl Kieburtz, MD, MPH (Chair); Karen Marder, MD, MPH (Co-Chair); Cynthia Comella, MD; J. Timothy Greenamyre, MD, PhD; Janis Miyasaki, MD; David Oakes, PhD; Ronald Pfeiffer, MD; William Weiner, MD; Mickie Welsh, RN, DNS; Karen Rabinowitz, JD, Associate Counsel; Roseanna Battista, Administrative Manager. The PSG Executive Committee oversees all the PSG study steering committees, the Scientific Review Committee, the Mentoring Committee, the Nominating Committee, the Credentials Committee, the Publications Committee, the Standards Committee, the Study Budget Committee, and the Symposia Committee. The Executive Committee is also responsible for overseeing the PSG working groups (Cognitive/Psychiatric (Behavior), Biomarkers, Genetics and Environmental Risk, Other Non-Motor Features of PD, Functional Neurosurgical) that are responsible for developing new PSG projects. PSG members interested in joining a working group may contact the Chair of that group directly (please see the PSG Working Group Leadership Teams, updated June 2008).

What is the PSG Scientific Review Committee (SRC)? Outline for Review of Proposals Submitted to the PSG Prior to submitting any proposal to the PSG, we encourage all investigators to make use of the PSG Working Groups and get assistance, if needed, from the PSG Mentoring Committee. 1. Proposal is submitted to PSG and reviewed by PSG Chair and Co-Chair 2. Proposal is assigned a primary and secondary reviewer from the Scientific Review Committee 3. Primary and secondary reviewers submit their review within 30 days of receipt 4. Proposal and reviews are distributed to the SRC 5. SRC rates the proposal using NIH standard rating scale and indicates approval or not 6. Proposal is approved, approved with criticisms, or not approved using an approval review rating of 2.0 as a cutoff for approval 7. Proposals with criticisms are referred to the PSG EC to follow up on Submissions due 30 days before SRC meeting and responses back to proposing investigator within 30 days of SRC meeting. SRC meets 3x/year, every 4 months. The Outline for Review of Proposals along with the above schedule is also available as a pdf document.

Who serves on the PSG Scientific Review Committee (SRC)? The current list of committee members includes: Timothy Greenamyre, MD, PhD, Chair Professor of Neurology University of Pittsburgh 3501 Fifth Avenue, Suite 7039 Pittsburgh, PA 15260 (412) 648-9793/Fax: (412) 648-9766 Email: jgreena@pitt.edu Statistics: Bruce Levin, PhD Professor & Chair Dept of Biostatistics Columbia University 772 West 168th Street Suite 626A New York, NY 10032 (212) 305-9401/Fax: (212) 305-9408 E-mail: bruce.levin@columbia.edu General Clinical: Glenna Dowling, RN, PhD Department of Physiological Nursing, Room N631 University of California, San Francisco Director, Institute on Aging, Research Center San Francisco, CA 94143-0610 (415) 502-7791/Fax: (415) 476-8899 Email: glenna.dowling@nursing.ucsf.edu Ergun Uc, MD University of Iowa Hospitals Movement Disorders Div Dept of Neurology 200 Hawkins Drive 2 RCP Iowa City, IA 52242 (319) 356-8754/Fax: (319) 356-4505 E-mail: ergun-uc@uiowa.edu Basic Science: Howard Federoff, MD, PhD Executive Vice President and Executive Dean Medical Center Administration Georgetown University Medical Center 4000 Reservoir Road, NW 120 Building D Washington, DC  20007 (202) 687-4600/Fax: (202) 687-1110 E-mail:  hjf8@georgetown.edu Mark F. Mehler, MD Professor of Neurology, Neuroscience, Psychiatry and Behavioral Sciences Albert Einstein College of Medicine Rose F. Kennedy Center 1410 Pelham Parkway South, Room 220 Bronx, NY 10461 (718) 430-3543/Fax: (718) 918-7505 Email: mehler@aecom.yu.edu William Langston, MD The Parkinson’s Institute 675 Almanor Avenue Sunnyvale, CA   94085 (408) 734-2800/ Fax: (408) 734-9208 E-mail: jwlangston@thepi.org Genetics/Genetic Epi: Joseph Savitt, MD, PhD Johns Hopkins Hospital Department of Neurology 600 North Wolfe Street Meyer 6-119 Baltimore, MD 21287-7619  (410) 614-0577/Fax: (433) 287-3933 E-mail: jsavitt@jhmi.edu Robert L. Nussbaum, MD University of California, San Francisco Department of Medicine/Genetics Box 0794, Core Campus, HSE 901E San Francisco, CA 94143-0794 (415) 476-3200/ Fax: (415) 502-0720 Email: nussbaumr@humgen.ucsf.edu William K. Scott, PhD Professor, Department of Medicine Division of Human Genetics Miami Institute for Human Genomics (MIHG) University of Miami, Miller School of Medicine P. O. Box 019132 (M-860) Miami, FL   33101 (305) 243-2371/ Fax: (305) 243-2396 Email: bscott@med.miami.edu Epidemiology: Harvey Checkoway, PhD University of Washington School of Public Health & Community Medicine Department of Environmental and Occupational Health Sciences Health Sciences Building, F-561F Box 357234 Seattle, WA 98195-7234 (206) 543-2052/ Fax: (206) 685-3990 Email: checko@u.washington.edu Caroline Tanner, MD, PhD, Co-chair The Parkinson’s Institute 675 Almanor Avenue Sunnyvale, CA 94089 (408) 734-2800/Fax: (408) 734-8455 E-mail: ctanner@thepi.org Neuropathology: Steven S. Chin, MD, PhD Associate Professor of Pathology (Clinical) Director of Neuropathology Department of Pathology University of Utah Health Sciences Center Huntsman Cancer Hospital - Room 3860 1950 Circle of Hope Salt Lake City, UT 84112 Tel.: (801) 587-4325; (801) 581-2507 Fax: (801) 585-3831 Email: steven.chin@path.utah.edu Psychiatry: Laura Marsh, MD Johns Hopkins University Dept of Psychiatry and Behavioral Sciences 600 North Wolfe Street/Phipps 300 Baltimore, MD 21287-7362 (410) 502-6945/ Fax: (410) 614-3676 Email: lmarsh@jhmi.edu Daniel Weintraub, MD Assistant Professor of Psychiatry and Neurology University of Pennsylvania 3535 Market Street, Room 3003 Philadelphia, PA 19104 (215) 349-8207/Fax: (215) 349-8389 Email: weintrau@mail.med.upenn.edu Neuropsychology: Robert K. Heaton, PhD Professor and Vice Chair for Academic Affairs Department of Psychiatry (0603) UCSD School of Medicine 9500 Gilman Drive La Jolla, California 92093-0603 (858) 534-4044/ Fax: (858) 534-7653 Email: rheaton@ucsd.edu Alexander I. Tröster, PhD Associate Professor Department of Neurology (CB 7025) University of North Carolina at Chapel Hill 3114 Bioinformatics Building Chapel Hill, NC 27599-7025 (919) 966-5549/Fax: (919) 966-2922 Email: TrosterA@neurology.unc.edu

What is the PSG Mentoring Committee (MC)? The PSG Mentoring Committee (MC) has three main roles.  1. To solicit, review, and select candidates to receive the Parkinson’s Disease Foundation supported mentored clinical research award.  This is a major award in support of a project that is a practical training ground for individuals to acquire new skills and expertise in clinical research.             2. To serve as a resource for individuals who need assistance in formulating and developing protocols to the point where they are ready for review by the Scientific Review Committee.              3. To develop and organize innovative programs to promote interest in Parkinson’s disease research, facilitate the development of mentorship relationships, and increase awareness of resources within the PSG that can provide opportunities for initiating research efforts.

Who Serves on the PSG Mentoring Committee (MC)? Cynthia Comella, MD, Chair Rush University Medical Center Department of Neurological Sciences 1725 West Harrison, Suite 755 Chicago, IL 60612 (312) 563-2900/Fax: (312) 563-2684 E-mail: ccomella@rush.edu Joel Perlmutter, MD, Co-Chair Washington University School of Medicine Department of Neurology 660 South Euclid, Box 8111 St. Louis, MO 63110 (314) 362-6026/Fax: (314) 362-0168 E-mail: joel@npg.wustl.edu Alberto Ascherio, MD, PhD Associate Professor Department of Nutrition Harvard School of Public Health Building II, 3rd Floor 655 Huntington Avenue Boston, MA 02115 (617) 432-0093; Fax: Email: alberto.ascherio@channing.harvard.edu Julie Carter, RN, MN, ANP Oregon Health & Science University Department of Neurology OPC32 3181 SW Sam Jackson Park Road Portland, OR 97239-3098 (503) 494-7235; Fax: (503) 494-9059 E-mail: carterju@ohsu.edu David Eidelberg, MD North Shore LIJ Health System 865 Northern Boulevard, Suite 201 Great Neck, NY 11021 (516) 570-4477; Fax: (516) 570-4499 E-mail: david1@nshs.edu Cindy Lawler, PhD Science Administrator NIEHS PO Box 12233, MD EC-23 111 TW Alexander Drive Research Triangle Park, NC 27709 (919) 316-4671; Fax: (919) 541-5064 Email: lawler@niehs.nih.gov Connie Marras, MD Toronto Western Hospital UN Health Network Movement Disorders Centre 399 Bathurst Street MC 7-402 Toronto ON M5T 2S8 Canada (416) 603-5990; Fax: (416) 603-5004 E-mail: connie.marras@utoronto.ca Mike McDermott, PhD University of Rochester Department of Biostatistics 601 Elmwood Avenue Box 630 Rochester, NY 14642 (585) 275-6685; Fax: (585) 273-1031 E-mail: mikem@bst.rochester.edu Barbara Vickrey, MD, MPH UCLA Medical Center Dept of Neurology/Health Service Research 710 Westwood Plaza C-128 RNRC Los Angeles, CA 90095-1769   (310) 206-7671; Fax: (310) 794-7716 E-mail: bvickrey@ucla.edu

Clinical Trials Coordination Center The PSG Clinical Trials Coordination Center (CTCC) at the University of Rochester is responsible for the overall coordination of the research activities, including data management for PSG clinical trials. The CTCC is directed by Bernard Ravina, MD. About 70 staff members, including postdoctoral fellows in experimental therapeutics, are involved in the implementation of study protocols, site communications, and data management.

Biostatistics Center The Biostatistics Center of the PSG is comprised of individuals from the Department of Biostatistics at the University of Rochester Medical Center. David Oakes, PhD, Michael McDermott, PhD, and Hongwei Zhao, DSc serve as chief biostatisticians for PSG trials. In addition to an 11-member faculty, and three postdoctoral fellows, a group of 12 programmers and research associates are responsible for the analysis of all PSG databases. Like the Clinical Trials Coordination Center, the Biostatistics Center participates in the training of pre- and postdoctoral students interested in controlled clinical trials.

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