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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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