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Appendixes

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Appendix A Workshop Agenda November 5, 2002 The National Academy of Sciences Auditorium Washington, DC 8:45 am Introduction Goals for the Day Queta Bond, Ph.D. Chair, Clinical Research Roundtable President, Burroughs Wellcome Fund Mary Woolley, MA Workshop Chair President, Research!America 9:00 9:50 10:10 10:30 Panel 1: Participant-Centered Clinical Research Moderator Myrl Weinberg, President, The National Health Council Lawrence W. Green, Dr.P.H. Director, Office of Science and Extramural Research Centers for Disease Control and Prevention Marshall H. Chin, M.D., M.P.H. Associate Professor of Medicine University of Chicago Clinical Research Roundtable Discussion Questions from the Audience Break 47 Zelda Tetenbaum Council of Public Representatives National Institutes of Health Jerome Yates, M.D. National Vice President for Research American Cancer Society

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48 ENGAGING THE PUBLIC IN THE CLINICAL RESEARCH ENTERPRISE 10:50 Panel 2: Model Collaborations Among Community/Disease Advocates, Researchers, and Sponsors Moderator Lawrence W. Green, Dr.P.H. Director, Office of Science and Extramural Research, CDC Kenneth Olden, Ph.D. Director National Institute of Environmental Health Science National Institutes of Health Kenneth A. Bertram, M.D., Ph.D., F.A.C.P. Colonel, U.S. Army Medical Corps Director Congressionally Directed Medical Research Programs 11:30 Clinical Research Roundtable Discussion 11:50 Questions from the Audience 12: 10 Lunch Fran Visco President National Breast Cancer Coalition Jennifer Bryson Director, Corporate Affairs Genentech, Inc. Leslie Ford, M.D. Associate Director for Clinical Research Division of Cancer Prevention National Cancer Institute 1:00 pm Panel 3: Increasing the Role of the Public in Research Oversight Moderator Queta Bond, Ph.D. President, Burroughs Wellcome Fund Chair, Clinical Research Roundtable Daniel Federman, M.D. Dean for Alumni Relations and Clinical Teaching Harvard University Chair, IOM Committee on Assessing the System for Protecting Human Research Participants Greg Koski, M.D. Director Office for Human Research Protections DHHS 2:00 Clinical Research Roundtable Discussion 2:30 Questions from the Audience Marjorie Speers, Ph.D. Executive Director Association for the Accreditation of Human Research Protection Programs Nancy Dubler, ID Division of Bioethics Montefiore Medical Center Albert Einstein College of Medicine Liaison, IOM Committee on Assessing the System for Protecting Human Research Participants Angela Bowen, M.D. President Western IRB

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APPENDIX A 3:00 Panel 4: Steps to Improve the Translation and Dissemination of the Results of Clinical Research John W. Walsh President and CEO Alpha-1 Foundation Stephen Katz, M.D., Ph.D. Director, National Institute of Arthritis and Musculoskeletal and Skin Diseases 3:50 4:10 4:30 4:45 5:15 49 Moderator Nancy Sung, Ph.D. Program Officer, Burroughs Wellcome Fund Barry Wolcott, M.D. Senior Vice President Clinical Services WebMD Health Clinical Research Roundtable Discussion Questions from the Audience Break NIH Perspective: Priorities for Engaging the Public in the Clinical Research Enterprise Elias Zerhouni, M.D. Director National Institutes of Health Department of Health and Human Services Clinical Research Roundtable Discussion Adjourn to Reception