Toward Precision Medicine: Building a Knowledge Network for Biomedical Research and a New Taxonomy of Disease (2011)
Chapter: Appendix C: March 1& 2, 2011 - Workshop Agenda
March 1& 2, 2011—Workshop Agenda
Framework for Developing a New Taxonomy of Disease
Tuesday and Wednesday, March 1 and 2, 2011
The House of Sweden—Alfred Nobel Hall
Washington, DC
AGENDA
Day 1
Breakfast available at 7:15 am in the Atrium Lounge
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8:00 AM |
SESSION 1: WELCOME AND OPENING TALKS • Committee co-chairs: o Susan Desmond-Hellmann: Chancellor, UCSF o Charles Sawyers: Director of HOPP, Memorial Sloan-Kettering Cancer Center • Chris Chute: Professor of Medical Informatics, Mayo Clinic College of Medicine—Current Taxonomy: importance, process of updating ICD • Atul Butte: Chief and Assistant Professor, Division of Systems Medicine, Department of Pediatrics, Stanford—Current Taxonomy transitioning to New Taxonomy |
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9:20 AM |
Break |
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9:35 AM |
A NEW TAXONOMY NETWORK—Keith Yamamoto A proposal for consideration and further development. |
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10:00 AM |
SESSION 2: DO WE NEED AN AMERICAN GENOMES PROJECT? A panel discussion—David Goldstein, Moderator Is genomic information central to a New Taxonomy of Disease? What are the opportunities and concerns? What is |
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happening now with whole-genome sequencing? What are the goals in near/ long term?—Define productive pathways. Andrew Conrad: Chief Scientific Officer, LabCorp’s NGI Kathy Giusti: Founder and Chief Executive Officer, Multiple Myeloma Research Foundation (MMRF) Panel discussion: ~30 min |
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11:00 AM |
SESSION 3: BEYOND THE GENOME—INFORMATION FOR A NEW TAXONOMY A panel discussion—Manuel Llinas, Moderator In addition to genome sequence, other information could be leveraged to improve health and research as part of a New Taxonomy of Disease Network. What information could/ should be included in the network? Would this enable longitudinal studies? Lewis Cantley: Chief, Division of Signal Transduction, Harvard Medical School—Metabolome, proteome Martin Blaser: —Frederick H. King Professor of Internal Medicine and Chairman of the Department of Medicine, NYU School of Medicine—Microbiome Jason Lieb: Professor, Department of Biology, UNC—Epigenetics; ENCODE project Helmut Zarbl: UMDNJ-Robert Wood Johnson Medical School, Environmental & Occupational Medicine, Rutgers University—Environmental Health, toxicology Erin Ramos: Epidemiologist, National Human Genome Research Institute—Sociological contributions, PhenX Panel discussion: ~30 min |
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12:45 PM |
Lunch |
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1:30 PM |
SESSION 4: ETHICS AND PRIVACY A panel discussion—Bernie Lo, Moderator Alta Charo: Professor of Law and Bioethics, University of Wisconsin Law School—Informed Consent, Privacy Sanford Schwartz: Professor of Medicine, Health Care Management, and Economics, University of Pennsylvania—Clinical validation issues Debra Lappin: President, Council for American Medical Innovation—Patient Advocate |
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Panel discussion: ~30 min |
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3:00 PM |
Break |
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3:30 PM |
SESSION 5: PRODUCT DEVELOPMENT—PHARMA; BIOTECH A panel discussion—David Cox; Moderator 1. How would a New Taxonomy of human disease enable more cost-effective and rapid development of new, effective, and safe drugs in the pharma/biotech setting? 2. How would a New Taxonomy of human disease promote integration of clinical and research cultures in the pharma/ biotech industry? 3. How would a New Taxonomy of human disease promote public/private partnerships between industry and academia? 4. What are key factors that would limit the implementation of a New Taxonomy of human disease in the pharma/biotech setting? • Klaus Lindpaintner: Vice President of R&D, SDI • Charles Baum: Vice President of Global R&D, Pfizer • Corey Goodman: Managing Director and Co-Founder, venBio Panel discussion: ~30 min |
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5:00 PM |
Summary of the day, overview of tomorrow, discussion: Susan Desmond-Hellmann and Charles Sawyers |
AGENDA
Day 2
Breakfast available at 7:15 am in the Atrium Lounge
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8:00 AM |
Opening Remarks: Susan Desmond-Hellmann and Charles Sawyers |
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8:10 AM |
SESSION 6: PRAGMATIC CONSIDERATIONS—THE END USER A panel discussion—David Hunter and David Nichols; Moderators 1. What taxonomy framework would be most useful for your end-user group? Why? |
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2. What characteristics of a taxonomy framework might harm your end-user group? Why? 3. What criteria should be used to assess the value of a New Taxonomy? (cost, ethics, practicality, health-care outcomes, etc.?) 4. Should the lay public be able to comprehend a New Taxonomy of Disease? • Janet Woodcock: Director, CDER/FDA • Jon Lorsch: Professor of Biophysics and Biophysical Chemistry, Johns Hopkins University, School of Medicine • Brian Kelly: Head of Informatics and Strategic Alignment, Aetna • Sanford Schwartz: Professor of Medicine, Health Care Management, and Economics, University of Pennsylvania—Cost Effectiveness Issues Panel discussion: ~30 min |
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10:00 AM |
Break |
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10:15 AM |
SESSION 7: INSTRUMENTING THE HEALTH CARE DELIVERY SYSTEM TO DEFINE AND LEVERAGE A NEW TAXONOMY A panel discussion—Isaac Kohane, Moderator Considerations for cognition, data handling, visualization and user interface. • Daniel Masys: Chair of the Department of Biomedical Informatics, Vanderbilt University Medical Center—eMERGE consortium (using health care data to run genomic studies) • John Brownstein: Instructor, Harvard Medical School—Informal data sources,Health map.org Panel discussion: ~30 min |
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12:00 PM |
Lunch |
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12:45 PM |
SESSION 8: A CLINICAL PERSPECTIVE ON A NEW TAXONOMY Case Studies—Charles Sawyers, Moderator Physician/Scientists consider what a New Taxonomy of Disease would mean for the disease they study. • William Pao: Director, Personalized Cancer Medicine at the Vanderbilt-Ingram Cancer Center—Lung Cancer |
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• Ingrid Scheffer: Professor of Paediatric Neurology Research, University of Melbourne—Epilepsy • Elissa Epel: Associate Professor in Residence, Department of Psychiatry at UCSF—Chronic Stress/ Obesity Panel discussion: ~30 min |
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2:15 PM |
Final discussion and Closing Remarks: Susan Desmond-Hellmann and Charles Sawyers (Committee will meet for an hour in closed session) |
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3:00 PM |
Adjourn |
