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?

  • What do you see as the biggest research challenges going forward?



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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? 

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 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

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 APPENDIX A 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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