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Suggested Citation:"Appendix C: March 1& 2, 2011 - Workshop Agenda." National Research Council. 2011. Toward Precision Medicine: Building a Knowledge Network for Biomedical Research and a New Taxonomy of Disease. Washington, DC: The National Academies Press. doi: 10.17226/13284.
×

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

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

9:20 AM

Break

9:35 AM

A NEW TAXONOMY NETWORK—Keith Yamamoto A proposal for consideration and further development.

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

Suggested Citation:"Appendix C: March 1& 2, 2011 - Workshop Agenda." National Research Council. 2011. Toward Precision Medicine: Building a Knowledge Network for Biomedical Research and a New Taxonomy of Disease. Washington, DC: The National Academies Press. doi: 10.17226/13284.
×

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

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

12:45 PM

Lunch

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

Suggested Citation:"Appendix C: March 1& 2, 2011 - Workshop Agenda." National Research Council. 2011. Toward Precision Medicine: Building a Knowledge Network for Biomedical Research and a New Taxonomy of Disease. Washington, DC: The National Academies Press. doi: 10.17226/13284.
×

Panel discussion: ~30 min

3:00 PM

Break

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

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

8:00 AM

Opening Remarks: Susan Desmond-Hellmann and Charles Sawyers

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?

Suggested Citation:"Appendix C: March 1& 2, 2011 - Workshop Agenda." National Research Council. 2011. Toward Precision Medicine: Building a Knowledge Network for Biomedical Research and a New Taxonomy of Disease. Washington, DC: The National Academies Press. doi: 10.17226/13284.
×

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

10:00 AM

Break

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

12:00 PM

Lunch

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

Suggested Citation:"Appendix C: March 1& 2, 2011 - Workshop Agenda." National Research Council. 2011. Toward Precision Medicine: Building a Knowledge Network for Biomedical Research and a New Taxonomy of Disease. Washington, DC: The National Academies Press. doi: 10.17226/13284.
×

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

2:15 PM

Final discussion and Closing Remarks: Susan Desmond-Hellmann and Charles Sawyers

(Committee will meet for an hour in closed session)

3:00 PM

Adjourn

Suggested Citation:"Appendix C: March 1& 2, 2011 - Workshop Agenda." National Research Council. 2011. Toward Precision Medicine: Building a Knowledge Network for Biomedical Research and a New Taxonomy of Disease. Washington, DC: The National Academies Press. doi: 10.17226/13284.
×

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Suggested Citation:"Appendix C: March 1& 2, 2011 - Workshop Agenda." National Research Council. 2011. Toward Precision Medicine: Building a Knowledge Network for Biomedical Research and a New Taxonomy of Disease. Washington, DC: The National Academies Press. doi: 10.17226/13284.
×
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Suggested Citation:"Appendix C: March 1& 2, 2011 - Workshop Agenda." National Research Council. 2011. Toward Precision Medicine: Building a Knowledge Network for Biomedical Research and a New Taxonomy of Disease. Washington, DC: The National Academies Press. doi: 10.17226/13284.
×
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Suggested Citation:"Appendix C: March 1& 2, 2011 - Workshop Agenda." National Research Council. 2011. Toward Precision Medicine: Building a Knowledge Network for Biomedical Research and a New Taxonomy of Disease. Washington, DC: The National Academies Press. doi: 10.17226/13284.
×
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Suggested Citation:"Appendix C: March 1& 2, 2011 - Workshop Agenda." National Research Council. 2011. Toward Precision Medicine: Building a Knowledge Network for Biomedical Research and a New Taxonomy of Disease. Washington, DC: The National Academies Press. doi: 10.17226/13284.
×
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Suggested Citation:"Appendix C: March 1& 2, 2011 - Workshop Agenda." National Research Council. 2011. Toward Precision Medicine: Building a Knowledge Network for Biomedical Research and a New Taxonomy of Disease. Washington, DC: The National Academies Press. doi: 10.17226/13284.
×
Page 113
Suggested Citation:"Appendix C: March 1& 2, 2011 - Workshop Agenda." National Research Council. 2011. Toward Precision Medicine: Building a Knowledge Network for Biomedical Research and a New Taxonomy of Disease. Washington, DC: The National Academies Press. doi: 10.17226/13284.
×
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Motivated by the explosion of molecular data on humans-particularly data associated with individual patients-and the sense that there are large, as-yet-untapped opportunities to use this data to improve health outcomes, Toward Precision Medicine explores the feasibility and need for "a new taxonomy of human disease based on molecular biology" and develops a potential framework for creating one.

The book says that a new data network that integrates emerging research on the molecular makeup of diseases with clinical data on individual patients could drive the development of a more accurate classification of diseases and ultimately enhance diagnosis and treatment. The "new taxonomy" that emerges would define diseases by their underlying molecular causes and other factors in addition to their traditional physical signs and symptoms. The book adds that the new data network could also improve biomedical research by enabling scientists to access patients' information during treatment while still protecting their rights. This would allow the marriage of molecular research and clinical data at the point of care, as opposed to research information continuing to reside primarily in academia.

Toward Precision Medicine notes that moving toward individualized medicine requires that researchers and health care providers have access to very large sets of health- and disease-related data linked to individual patients. These data are also critical for developing the information commons, the knowledge network of disease, and ultimately the new taxonomy.

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