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Agenda: Exploring New Models for Engaging the Public in the Clinical Research Enterprise

8:45 a.m. INTRODUCTION: GOALS FOR THE DAY

Queta Bond, Ph.D.
Chair, Clinical Research Roundtable
President, Burroughs Wellcome Fund

Mary Woolley, MA
President, Research! America

9:00 a.m. PANEL 1: PARTICIPANT CENTERED CLINICAL RESEARCH

Myrl Weinberg (Moderator)
President
The National Health Council

Jerome Yates, M.D., M.P.H.
National Vice President for Research
American Cancer Society

Lawrence W. Green, Dr.P.H.
Director
Extramural Prevention Research Partnerships
Centers for Disease Control and Prevention

Kenneth Olden, Ph.D.
Director
National Institute of Environmental Health Science
NIH

Zelda Tetenbaum
Council of Public Respresentatives
National Institutes of Health

Marshall H. Chin, M.D., M.P.H.
Associate Professor of Medicine
University of Chicago

9:40 a.m. CLINICAL RESEARCH ROUNDTABLE DISCUSSION

10:00 a.m. QUESTIONS FROM THE AUDIENCE

10:20 a.m. BREAK

10:30 a.m. PANEL 2: MODEL COLLABORATIONS AMONG COMMUNITY/DISEASE ADVOCATES, RESEARCHERS, AND SPONSORS

Lawrence W. Green, Dr.P.H. (Moderator)
Director
Extramural Prevention Research Partnerships
Centers for Disease Control and Prevention

Jennifer Bryson
Associate Director of Patient Advocacy Issues
Genentech, Inc

Leslie Ford, M.D.
Associate Director for Clinical Research
Division of Cancer Prevention
National Cancer Institute

Fran Visco
President
National Breast Cancer Coalition

Kenneth A. Bertram, M.D., Ph.D., F.A.C.P.
Colonel, U.S. Army Medical Corps
Director, Congressionally Directed Medical Research Programs

11:10 a.m. CLINICAL RESEARCH ROUNDTABLE DISCUSSION

11:30 a.m. QUESTIONS FROM THE AUDIENCE

11:50 a.m. LUNCH

1:00 p.m. PANEL 3: INCREASING THE ROLE OF THE PUBLIC IN RESEARCH OVERSIGHT

Queta Bond, Ph.D. (Moderator)
President, Burroughs Wellcome Fund
Chair, Clinical Research Roundtable

Improving the Human Research Protection System: Action Steps
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

Marjorie Speers, Ph.D.
Executive Director
Association for the Accreditation of Human Research Protection Programs

Views of Non-Scientist Members of Ethical Review Boards
Nancy Dubler, J.D.
Division of Bioethics
Montefiore Medical Center
Albert Einstein College of Medicine
Liaison, IOM Committee on Assessing the System for Protecting Human Research Participants

Creating Incentives for Community Participation on IRBs
Angela Bowen
President
Western IRB

2:00 p.m. CLINICAL RESEARCH ROUNDTABLE DISCUSSION

2:30 p.m. QUESTIONS FROM THE AUDIENCE

3:00 p.m. PANEL 4: STEPS TO IMPROVE THE TRANSLATION AND DISSEMINATION OF THE RESULTS OF CLINICAL RESEARCH

Francis Chesley, MD (Moderator)
Director
Agency for Healthcare Research and Quality

John W. Walsh
President and CEO
Alpha-1 Foundation

Stephen Katz, MD, Ph.D.
Director
National Institute of Arthritis and Musculoskeletal and Skin Diseases

Alexa McCray, Ph.D.
Director
Lister Hill National Center for Biomedical Communications
National Library of Medicine

Sally Squires
Health Reporter
Washington Post
(Not in attendance)

Barry Wolcott, M.D.
Senior Physician
WebMD Health

3:50 p.m. CLINICAL RESEARCH ROUNDTABLE DISCUSSION

4:10 p.m. QUESTIONS FROM THE AUDIENCE

4:30 p.m. BREAK

4:45 p.m. NIH PERSPECTIVE: PRIORITIES FOR ENGAGING THE PUBLIC IN CLINICAL RESEARCH

Elias Zerhouni, M.D.
Director
National Institutes of Health
Department of Health and Human Services

5:15 p.m. CLINICAL RESEARCH ROUNDTABLE DISCUSSION

5:30 p.m. ADJOURN

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