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Appendix A Workshop Agenda Systems for Research and Evaluation for Translating Genome-Based Discoveries for Health Beckman Center 100 Academy Drive Irvine, CA 92612 February 12, 2009 Auditorium 9:00â9:15 am Welcome and Presentation of Workshop Objectives Wylie Burke, Chair University of Washington 9:15â9:35 Generating Evidence for Decision Making: Does the Type of Decision Being Made Influence the Evidence Needed? Steven Teutsch Los Angeles Public Health Department 9:35â11:45 Panel: Creating Evidence Systems Each of the following speakers will address the following questions: â¢ What are your goals for genetic research? â¢ How do you decide what studies to pursue? â¢ What barriers did you overcome or still face? â¢ hat do you see as the biggest research W challenges going forward? 73
74 SYSTEMS FOR RESEARCH AND EVALUATION 9:35â9:50 HMO Research Network Robert Davis Director of Research, Kaiser Permanente Georgia 9:50â10:05 Veterans Administration Sumitra Muralidhar Office of Research and Development 10:05â10:20 InterMountain Health Marc S. Williams Director, Clinical Genetics Institute 10:20â10:40 BREAK 10:40â11:45 Discussion 11:45 amâ1:00 pm LUNCH 1:00â2:45 Panel: Current Practices in Moving from Evidence to Decision Each of the speakers will address the following questions: â¢ hat uses of genetics does your program W consider? â¢ What evidence do you need? â¢ hat kind of process is used to make the W decisions? â¢ hat infrastructure is needed to support the W process? 1:00â1:15 Rare Disease Model James Perrin Professor of Pediatrics, Harvard Medical School 1:15â1:35 Discussion 1:35â1:50 Duke Guided Genomic Studies Geoffrey Ginsburg Director, Center for Genomic Medicine
APPENDIX A 75 1:50â2:05 National Cardiovascular Disease Registries Ralph Brindis Regional Senior Advisor for Cardiovascular Diseases, Northern California Kaiser Permanente 2:05â2:45 Discussion 2:45â3:00 BREAK 3:00â3:30 Panel: Where Are the Gaps? Three invited speakers will discuss their perspectives on the gaps in systems for evaluation of genome-based health care. Each participant will take 10 minutes to describe what he or she sees as gaps, given the dayâs presentations. 3:00â3:10 Bruce Quinn Senior Health Policy Specialist, Foley Hoag LLP 3:10â3:20 Al Berg University of Washington 3:20â3:30 Kathryn Phillips Professor, UCSF School of Pharmacy 3:30â4:15 Discussion 4:15â4:45 Brief Summary of What Was Presented and Next Steps Wylie Burke, Chair University of Washington Sharon Kardia University of Michigan Sharon Terry Genetic Alliance 4:45 ADJOURN