FORUM ON NEUROSCIENCE AND NERVOUS SYSTEM DISORDERS

VENTURE PHILANTHROPY STRATEGIES TO SUPPORT TRANSLATIONAL RESEARCH

WORKSHOP SUMMARY

Sarah Hanson, Lori Nadig, and Bruce Altevogt, Rapporteurs

Forum on Neuroscience and Nervous System Disorders

Board on Health Sciences Policy

INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS

Washington, D.C.
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Sarah Hanson, Lori Nadig, and Bruce Altevogt, Rapporteurs Forum on Neuroscience and Nervous System Disorders Board on Health Sciences Policy

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THE NATIONAL ACADEMIES PRESS • 500 Fifth Street, N.W. • Washington, DC 20001 NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance. This project was supported by contracts between the National Academy of Sciences and the Alzheimer’s Association; AstraZeneca Pharmaceuticals, Inc.; CeNeRx Biopharma; the Department of Health and Human Services’ National Institutes of Health (NIH, Contract No. N01-OD-4-213) through the National Eye Institute, the National Institute of Mental Health, the National Institute of Neurological Disorders and Stroke, the National Institute on Aging, the National Institute on Alcohol Abuse and Alcoholism, the National Institute on Drug Abuse, the NIH Blueprint for Neuroscience Research; Eli Lilly and Company; GE Healthcare, Inc.; GlaxoSmithKline, Inc.; Johnson & Johnson Pharmaceutical Research and Development, Inc.; Merck Research Laboratories, Inc.; the National Multiple Sclerosis Society; the National Science Foundation (Contract No. OIA-0753701); the Society for Neuroscience; and Wyeth Research, Inc. The views presented in this publication are those of the editors and attributing authors and do not necessarily reflect the view of the organizations or agencies that provided support for this project. International Standard Book Number-13: 978-0-309-11666-4 International Standard Book Number-10: 0-309-11666-X Additional copies of this report are available from the National Academies Press, 500 Fifth Street, N.W., Lockbox 285, Washington, DC 20055; (800) 624- 6242 or (202) 334-3313 (in the Washington metropolitan area); Internet, http://www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu. Copyright 2009 by the National Academy of Sciences. All rights reserved. Printed in the United States of America. Suggested citation: IOM (Institute of Medicine). 2009. Venture philanthropy strategies to support translational research: Workshop summary. Washington, DC: The National Academies Press.

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The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Ralph J. Cicerone is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Charles M. Vest is president of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Harvey V. Fineberg is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. Charles M. Vest are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

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WORKSHOP ON VENTURE PHILANTHROPY STRATEGIES TO SUPPORT TRANSLATIONAL RESEARCH PLANNING COMMITTEE* TIMOTHY COETZEE (Co-chair), National Multiple Sclerosis Society, New York WILLIAM THIES (Co-chair), Alzheimer’s Association, Chicago, IL HUDA AKIL, University of Michigan, Ann Arbor DANIEL BURCH, CeNeRx Biopharma, Research Triangle Park, NC DENNIS CHOI, Emory University, Atlanta, GA JUDY ILLES, University of British Columbia, Vancouver, Canada WALTER KOROSHETZ, National Institute of Neurological Disorders and Stroke, Bethesda, MD STORY LANDIS, National Institute of Neurological Disorders and Stroke, Bethesda, MD RICHARD NAKAMURA, National Institute of Mental Health, Bethesda, MD RAE SILVER, Columbia University, New York CHRISTIAN ZIMMERMAN, Neuroscience Associates, Boise, ID Study Staff BRUCE M. ALTEVOGT, Project Director SARAH L. HANSON, Associate Program Officer LORA K. TAYLOR, Senior Project Assistant ___________________________ ∗ IOM planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution. v

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FORUM ON NEUROSCIENCE AND NERVOUS SYSTEM DISORDERS* ALAN LESHNER (Chair), American Association for the Advancement of Science, Washington, DC HUDA AKIL, University of Michigan, Ann Arbor MARC BARLOW, GE Healthcare, Inc., Buck, United Kingdom DAVID BREDT, Lilly Research Laboratories, Indianapolis, IN DANIEL BURCH, CeNeRx Biopharma, Research Triangle Park, NC DENNIS CHOI, Emory University, Atlanta, GA TIMOTHY COETZEE, National Multiple Sclerosis Society, New York DAVID COHEN, Columbia University, Society for Neuroscience, New York RICHARD FRANK, GE Healthcare, Inc., Princeton, NJ RICHARD HODES, National Institute on Aging, Bethesda, MD STEVEN HYMAN, Harvard University, Cambridge, MA JUDY ILLES, University of British Columbia, Vancouver, Canada THOMAS INSEL, National Institute of Mental Health, Bethesda, MD STORY LANDIS, National Institute of Neurological Disorders and Stroke, Bethesda, MD TING-KAI LI, National Institute on Alcohol Abuse and Alcoholism, Bethesda, MD (until October 2008) MICHAEL OBERDORFER, NIH Neuroscience Blueprint, Bethesda, MD KATHIE OLSEN, National Science Foundation, Arlington, VA ATUL PANDE, GlaxoSmithKline, Inc., Research Triangle Park, NC MENELAS PANGALOS, Wyeth Research, Inc., Princeton, NJ STEVEN PAUL, Eli Lilly and Company, Indianapolis, IN WILLIAM POTTER, Merck Research Laboratories, Inc., North Wales, PA PAUL SIEVING, National Eye Institute, Bethesda, MD RAE SILVER, Columbia University, New York WILLIAM THIES, Alzheimer’s Association, Chicago, IL ROY TWYMAN, Johnson & Johnson Pharmaceutical Research and Development, Inc., Titusville, NJ ___________________________ * IOM forums and roundtables do not issue, review, or approve individual documents. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution. vi

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NORA VOLKOW, National Institute on Drug Abuse, Bethesda, MD KENNETH WARREN, National Institute on Alcohol Abuse and Alcoholism, Bethesda, MD (since October 2008) FRANK YOCCA, AstraZeneca Pharmaceuticals, Wilmington, DE CHRISTIAN ZIMMERMAN, Neuroscience Associates, Boise, ID Study Staff BRUCE M. ALTEVOGT, Project Director SARAH L. HANSON, Associate Program Officer LORA K. TAYLOR, Senior Project Assistant ANDREW M. POPE, Director, Board on Health Sciences Policy vii

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Independent Report Reviewers This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the National Research Council’s Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its pub- lished report as sound as possible and to ensure that the report meets in- stitutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confi- dential to protect the integrity of the deliberative process. We wish to thank the following individuals for their review of this report: Sophia Colamarino, Autism Speaks Katie Hood, The Michael J. Fox Foundation for Parkinson’s Research Stephen M. Rose, Foundation Fighting Blindness Avi D. Spier, Genomics Institute of the Novartis Research Foundation Although the reviewers listed above have provided many construc- tive comments and suggestions, they did not see the final draft of the re- port before its release. The review of this report was overseen by Sharon B. Murphy, scholar-in-residence, Institute of Medicine, who was responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring com- mittee and the institution. ix

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Contents INTRODUCTION 1 1 GETTING STARTED IN TRANSLATIONAL RESEARCH 9 2 MODELS FOR BUILDING A TRANSLATIONAL RESEARCH PROGRAM 21 3 LEGAL, ACCOUNTING, AND PROCESS ISSUES 27 4 PARTNERSHIPS, DATA SHARING, AND INTELLECTUAL PROPERTY 37 5 COMMUNICATIONS 47 CONCLUSION 53 APPENDIXES A References 57 B Workshop on Venture Philanthropy Strategies Used by Patient Organizations to Support Translational Research 59 C Workshop Attendees 69 D Biographical Sketches of Invited Speakers, Planning Committee Members, and Staff 71 xi

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