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Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2009. Systems for Research and Evaluation for Translating Genome-Based Discoveries for Health: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12691.
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Page 73
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2009. Systems for Research and Evaluation for Translating Genome-Based Discoveries for Health: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12691.
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Page 74
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2009. Systems for Research and Evaluation for Translating Genome-Based Discoveries for Health: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12691.
×
Page 75
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2009. Systems for Research and Evaluation for Translating Genome-Based Discoveries for Health: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12691.
×
Page 76

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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 9:00–9:15 am Welcome and Presentation of Workshop Objectives Wylie Burke, Chair University of Washington 9:15–9:35 Generating Evidence for Decision Making: Does the Type of Decision Being Made Influence the Evidence Needed? Steven Teutsch Los Angeles Public Health Department 9:35–11:45 Panel: Creating Evidence Systems Each of the following speakers will address the following questions: • What are your goals for genetic research? • How do you decide what studies to pursue? • What barriers did you overcome or still face? •  hat do you see as the biggest research W challenges going forward? 73

74 SYSTEMS FOR RESEARCH AND EVALUATION 9:35–9:50 HMO Research Network Robert Davis Director of Research, Kaiser Permanente Georgia 9:50–10:05 Veterans Administration Sumitra Muralidhar Office of Research and Development 10:05–10:20 InterMountain Health Marc S. Williams Director, Clinical Genetics Institute 10:20–10:40 BREAK 10:40–11:45 Discussion 11:45 am–1:00 pm LUNCH 1:00–2:45 Panel: Current Practices in Moving from Evidence to Decision Each of the speakers will address the following questions: •  hat uses of genetics does your program W consider? • What evidence do you need? •  hat kind of process is used to make the W decisions? •  hat infrastructure is needed to support the W process? 1:00–1:15 Rare Disease Model James Perrin Professor of Pediatrics, Harvard Medical School 1:15–1:35 Discussion 1:35–1:50 Duke Guided Genomic Studies Geoffrey Ginsburg Director, Center for Genomic Medicine

APPENDIX A 75 1:50–2:05 National Cardiovascular Disease Registries Ralph Brindis  Regional Senior Advisor for Cardiovascular Diseases, Northern California Kaiser Permanente 2:05–2:45 Discussion 2:45–3:00 BREAK 3:00–3:30 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 day’s presentations. 3:00–3:10 Bruce Quinn Senior Health Policy Specialist, Foley Hoag LLP 3:10–3:20 Al Berg University of Washington 3:20–3:30 Kathryn Phillips Professor, UCSF School of Pharmacy 3:30–4:15 Discussion 4:15–4:45 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

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With the advent of genome-wide association studies, numerous associations between specific gene loci and complex diseases have been identified--for breast cancer, coronary artery disease, and asthma, for example. This rapidly advancing field of genomics has stirred great interest in "personalized" health care from both the public and private sectors. The hope is that using genomic information in clinical care will lead to reduced health care costs and improved health outcomes as therapies are tailored to the genetic susceptibilities of patients.

A variety of genetically based health care innovations have already reached the marketplace, but information about the clinical use of these treatments and diagnostics is limited. Currently data do not provide information about how a genomic test impacts clinical care and patient health outcomes--other approaches are needed to garner such information.

This volume summarizes a workshop to address central questions related to the development of systems to evaluate clinical use of health care innovations that stem from genome-based research:

What are the practical realities of creating such systems?

What different models could be used?

What are the strengths and weaknesses of each model?

How effectively can such systems address questions about health outcomes?

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