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Appendix C 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 SESSION 1: WELCOME AND OPENING TALKS 8:00 AM • Committee co-chairs: o Susan Desmond-Hellmann: Chancellor, UCSF o Charles Sawyers: Director of HOPP, Memorial Sloan- Kettering Cancer Center • hris Chute: Professor of Medical Informatics, Mayo Clinic C College of Medicine—Current Taxonomy: importance, process of updating ICD • tul Butte: Chief and Assistant Professor, Division of Systems A Medicine, Department of Pediatrics, Stanford—Current Taxonomy transitioning to New Taxonomy Break 9:20 AM A NEW TAXONOMY NETWORK—Keith Yamamoto A 9:35 AM proposal for consideration and further development. SESSION 2: DO WE NEED AN AMERICAN GENOMES 10:00 AM 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 109

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110 APPENDIX C 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 SESSION 3: BEYOND THE GENOME—INFORMATION 11:00 AM 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 Lunch 12:45 PM SESSION 4: ETHICS AND PRIVACY 1:30 PM 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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111 APPENDIX C Panel discussion: ~30 min Break 3:00 PM SESSION 5: PRODUCT DEVELOPMENT—PHARMA; 3:30 PM 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 • orey Goodman: Managing Director and Co-Founder, C venBio Panel discussion: ~30 min Summary of the day, overview of tomorrow, discussion: Susan 5:00 PM Desmond-Hellmann and Charles Sawyers AGENDA Day 2 Breakfast available at 7:15 am in the Atrium Lounge Opening Remarks: Susan Desmond-Hellmann and Charles 8:00 AM Sawyers SESSION 6: PRAGMATIC CONSIDERATIONS— 8:10 AM 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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112 APPENDIX C 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 • on Lorsch: Professor of Biophysics and Biophysical J Chemistry, Johns Hopkins University, School of Medicine • rian Kelly: Head of Informatics and Strategic Alignment, B Aetna • anford Schwartz: Professor of Medicine, Health Care S Management, and Economics, University of Pennsylvania— Cost Effectiveness Issues Panel discussion: ~30 min Break 10:00 AM SESSION 7: INSTRUMENTING THE HEALTH CARE 10:15 AM DELIVERY SYSTEM TO DEFINE AND LEVERAGE A NEW TAXONOMY A panel discussion—Isaac Kohane, Moderator Considerations for cognition, data handling, visualization and user interface. • aniel Masys: Chair of the Department of Biomedical D Informatics, Vanderbilt University Medical Center— eMERGE consortium (using health care data to run genomic studies) • ohn Brownstein: Instructor, Harvard Medical School— J Informal data sources,Health map.org Panel discussion: ~30 min Lunch 12:00 PM SESSION 8: A CLINICAL PERSPECTIVE ON A NEW 12:45 PM TAXONOMY Case Studies—Charles Sawyers, Moderator Physician/Scientists consider what a New Taxonomy of Disease would mean for the disease they study. • illiam Pao: Director, Personalized Cancer Medicine at the W Vanderbilt-Ingram Cancer Center—Lung Cancer

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113 APPENDIX C • ngrid Scheffer: Professor of Paediatric Neurology Research, I University of Melbourne—Epilepsy • lissa Epel: Associate Professor in Residence, Department of E Psychiatry at UCSF—Chronic Stress/ Obesity Panel discussion: ~30 min Final discussion and Closing Remarks: Susan Desmond- 2:15 PM Hellmann and Charles Sawyers (Committee will meet for an hour in closed session) Adjourn 3:00 PM

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