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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Neuroscience Data in the Cloud: Opportunities and Challenges: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25653.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Neuroscience Data in the Cloud: Opportunities and Challenges: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25653.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Neuroscience Data in the Cloud: Opportunities and Challenges: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25653.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Neuroscience Data in the Cloud: Opportunities and Challenges: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25653.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Neuroscience Data in the Cloud: Opportunities and Challenges: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25653.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Neuroscience Data in the Cloud: Opportunities and Challenges: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25653.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Neuroscience Data in the Cloud: Opportunities and Challenges: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25653.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Neuroscience Data in the Cloud: Opportunities and Challenges: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25653.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Neuroscience Data in the Cloud: Opportunities and Challenges: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25653.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Neuroscience Data in the Cloud: Opportunities and Challenges: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25653.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Neuroscience Data in the Cloud: Opportunities and Challenges: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25653.
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Page xiii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Neuroscience Data in the Cloud: Opportunities and Challenges: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25653.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Neuroscience Data in the Cloud: Opportunities and Challenges: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25653.
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Below is the uncorrected machine-read text of this chapter, intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text of each book. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

Lisa Bain, Amanda Wagner Gee, and Clare Stroud, Rapporteurs Forum on Neuroscience and Nervous System Disorders Board on Health Sciences Policy Health and Medicine Division PREPUBLICATION COPY—Uncorrected Proofs

THE NATIONAL ACADEMIES PRESS   500 Fifth Street, NW   Washington, DC 20001 This activity was supported by contracts between the National Academy of Sci- ences and the Alzheimer’s Association; Cohen Veterans Bioscience; Department of Health and Human Services’ Food and Drug Administration (5R13FD005362-05) and National Institutes of Health (NIH) (75N98019F00769 [Under Master Base HHSN263201800029I]) through the National Center for Complementary and Integrative Health, National Eye Institute, National Institute of Mental Health, National Institute of Neurological Disorders and Stroke, National Institute on Aging, National Institute on Alcohol Abuse and Alcoholism, National Institute on Drug Abuse, and NIH Blueprint for Neuroscience Research; Department of Veterans ­ Affairs (VA240-14-C-0057); Eisai Inc.; Eli Lilly and Company; Foundation for the National Institutes of Health; Gatsby Charitable Foundation; Janssen Research & Development, LLC; The Kavli Foundation; Lundbeck Research USA; Merck Research Laboratories; The Michael J. Fox Foundation for Parkinson’s Research; National Multiple Sclerosis Society; National Science Foundation (BCS-1064270); One Mind; Sanofi; Society for Neuroscience; Takeda Pharmaceuticals International, Inc.; The University of Rhode Island; and Wellcome Trust. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project. International Standard Book Number-13: 978-0-309-XXXXX-X International Standard Book Number-10: 0-309-XXXXX-X Digital Object Identifier: https://doi.org/10.17266/25653 Additional copies of this publication are available from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu. Copyright 2020 by the National Academy of Sciences. All rights reserved. Printed in the United States of America Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2020. Neuroscience data in the cloud: Opportunities and challenges: ­ roceedings P of a workshop. Washington, DC: The National Academies Press. https://doi. org/10.17226/25653. PREPUBLICATION COPY—Uncorrected Proofs

The National Academy of Sciences was established in 1863 by an Act of C ­ ongress, signed by President Lincoln, as a private, nongovernmental institu- tion to advise the nation on issues related to science and technology. Members are elected by their peers for outstanding contributions to research. Dr. Marcia McNutt is president. The National Academy of Engineering was established in 1964 under the char- ter of the National Academy of Sciences to bring the practices of engineering to advising the nation. Members are elected by their peers for extraordinary contributions to engineering. Dr. John L. Anderson is president. The National Academy of Medicine (formerly the Institute of Medicine) was established in 1970 under the charter of the National Academy of Sciences to advise the nation on medical and health issues. Members are elected by their peers for distinguished contributions to medicine and health. Dr. Victor J. Dzau is president. The three Academies work together as the National Academies of Sciences, Engi­ eering, and Medicine to provide independent, objective analysis and n a ­ dvice to the nation and conduct other activities to solve complex problems and inform public policy decisions. The National Academies also encourage education and research, recognize outstanding contributions to knowledge, and increase public understanding in matters of science, engineering, and medicine. Learn more about the National Academies of Sciences, Engineering, and ­ edicine M at www.nationalacademies.org. PREPUBLICATION COPY—Uncorrected Proofs

Consensus Study Reports published by the National Academies of Sciences, Engineering, and Medicine document the evidence-based consensus on the study’s statement of task by an authoring committee of experts. Reports typi- cally include findings, conclusions, and recommendations based on information gathered by the committee and the committee’s deliberations. Each report has been subjected to a rigorous and independent peer-review process and it represents the position of the National Academies on the statement of task. Proceedings published by the National Academies of Sciences, Engineering, and Medicine chronicle the presentations and discussions at a workshop, symposium, or other event convened by the National Academies. The statements and ­ pinions o contained in proceedings are those of the participants and are not endorsed by other participants, the planning committee, or the National Academies. For information about other products and activities of the National Academies, please visit www.nationalacademies.org/about/whatwedo. PREPUBLICATION COPY—Uncorrected Proofs

PLANNING COMMITTEE ON NEUROSCIENCE DATA IN THE CLOUD1 DEANNA BARCH (Co-Chair), Washington University in St. Louis MICHAEL HUERTA (Co-Chair), National Library of Medicine, National Institutes of Health AMIEE ALOI, Gates Ventures ROSA CANET-AVILÉS, Foundation for the National Institutes of Health JONATHAN COHEN, Princeton University PATRICK CULLINAN, bluebird bio GREGORY FARBER, National Institute of Mental Health DANIEL GESCHWIND, University of California, Los Angeles MAGALI HAAS, Cohen Veterans Bioscience MICHAEL HAWRYLYCZ, Allen Institute for Brain Science STUART HOFFMAN, Department of Veterans Affairs MICHAEL MILHAM, Child Mind Institute KARLA MILLER, University of Oxford BENJAMIN NEALE, Massachusetts General Hospital; Broad Institute KRISTEN ROSATI, Coppersmith Brockelman, PLC LUBA SMOLENSKY, The Michael J. Fox Foundation for Parkinson’s Research MARGARET SUTHERLAND, Chan Zuckerberg Initiative Health and Medicine Division Staff CLARE STROUD, Director, Forum on Neuroscience and Nervous System Disorders SHEENA M. POSEY NORRIS, Program Officer PHOENIX WILSON, Senior Program Assistant ANDREW M. POPE, Senior Director, Board on Health Sciences Policy 1 The National Academies of Sciences, Engineering, and Medicine’s planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. ­ The responsibility for the published Proceedings of a Workshop rests with the workshop r ­ apporteurs and the institution. v PREPUBLICATION COPY—Uncorrected Proofs

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FORUM ON NEUROSCIENCE AND NERVOUS SYSTEM DISORDERS1 FRANCES JENSEN (Co-Chair), University of Pennsylvania JOHN KRYSTAL (Co-Chair), Yale University SUSAN AMARA, Society for Neuroscience RITA BALICE-GORDON, Sanofi KATJA BROSE, Chan Zuckerberg Initiative EMERY BROWN, Harvard Medical School and Massachusetts Institute of Technology DANIEL BURCH, Pharmaceutical Product Development, LLC JOSEPH BUXBAUM, Icahn School of Medicine at Mount Sinai SARAH CADDICK, Gatsby Charitable Foundation ROSA CANET-AVILÉS, Foundation for the National Institutes of Health MARIA CARRILLO, Alzheimer’s Association EDWARD CHANG, University of California, San Francisco TIMOTHY COETZEE, National Multiple Sclerosis Society JONATHAN COHEN, Princeton University ROBERT CONLEY, Eli Lilly and Company JAMES DESHLER, National Science Foundation BILLY DUNN, Food and Drug Administration MICHAEL EGAN, Merck Research Laboratories NITA FARAHANY, Duke University School of Law JOSHUA GORDON, National Institute of Mental Health RAQUEL GUR, University of Pennsylvania MAGALI HAAS, Cohen Veterans Bioscience RAMONA HICKS, One Mind RICHARD HODES, National Institute on Aging STUART HOFFMAN, Department of Veterans Affairs JONATHAN HORSFORD, National Institute of Dental and Craniofacial Research YASMIN HURD, Icahn School of Medicine at Mount Sinai STEVEN HYMAN, Broad Institute of Massachusetts Institute of Technology and Harvard University MICHAEL IRIZARRY, Eisai Inc. GEORGE KOOB, National Institute on Alcohol Abuse and Alcoholism WALTER KOROSHETZ, National Institute of Neurological Disorders and Stroke 1  The National Academies of Sciences, Engineering, and Medicine’s forums and roundtables do not issue, review, or approve individual documents. The responsibility for the published Proceedings of a Workshop rests with the workshop rapporteurs and the institution. vii PREPUBLICATION COPY—Uncorrected Proofs

STORY LANDIS, National Institute of Neurological Disorders and Stroke (Director Emeritus) ALAN LESHNER, American Association for the Advancement of Science (Emeritus) HUSSEINI MANJI, Janssen Research & Development, LLC CAROLINE MONTOJO, The Kavli Foundation STEVEN PAUL, Voyager Therapeutics, Inc. EMILIANGELO RATTI, Takeda Pharmaceuticals International, Inc. TODD SHERER, The Michael J. Fox Foundation for Parkinson’s Research DAVID SHURTLEFF, National Center for Complementary and Integrative Health SANTA TUMMINIA, National Eye Institute NORA VOLKOW, National Institute on Drug Abuse ANDREW WELCHMAN, Wellcome Trust DOUG WILLIAMSON, Lundbeck STEVIN ZORN, MindImmune Therapeutics, Inc. Health and Medicine Division Staff CLARE STROUD, Forum Director SHEENA M. POSEY NORRIS, Program Officer AMANDA WAGNER GEE, Program Officer PHOENIX WILSON, Senior Program Assistant BARDIA MASSOUDKHAN, Financial Business Partner ANDREW M. POPE, Senior Director, Board on Health Sciences Policy viii PREPUBLICATION COPY—Uncorrected Proofs

Reviewers This Proceedings of a Workshop was reviewed in draft form by indi- viduals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical com- ments that will assist the National Academies of Sciences, Engineering, and Medicine in making each published proceedings as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evi- dence, and responsiveness to the charge. The review comments and draft manuscript remain confidential to protect the integrity of the process. We thank the following individuals for their review of this proceedings: SEAN HILL, Centre for Addiction and Mental Health REBECCA LI, Vivli MARYANN MARTONE, University of California, San Diego Although the reviewers listed above provided many constructive com- ments and suggestions, they were not asked to endorse the content of the proceedings nor did they see the final draft before its release. The review of this proceedings was overseen by LUCILA OHNO-MACHADO, University of California, San Diego. She was responsible for making certain that an independent examination of this proceedings was carried out in accordance with standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the rapporteurs and the National Academies. ix PREPUBLICATION COPY—Uncorrected Proofs

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Contents 1 INTRODUCTION AND BACKGROUND 1 Workshop Objectives, 3 Organization of Proceedings, 4 2 HARNESSING CLOUD-BASED TECHNOLOGIES TO ADVANCE NEUROSCIENCE RESEARCH: SELECT CURRENT INITIATIVES 7 International Neuroscience Coordinating Facility, 8 Open Neuro, 10 STRIDES, 12 PART 1 CLOUD-BASED TECHNOLOGIES FOR NEUROSCIENCE RESEARCH: CHALLENGES AND POTENTIAL SOLUTIONS 3 PROTECTING PRIVACY IN THE CLOUD 17 Current Promising Practices to Protect Privacy, 19 Key Privacy-Related Issues to Be Resolved, 23 4 MANAGING DATA AND PROMOTING INTEROPERABILITY IN THE CLOUD 25 Current Promising Practices Regarding Standards Development and Interoperability, 27 Data Management Issues to Be Resolved, 28 xi PREPUBLICATION COPY—Uncorrected Proofs

xii CONTENTS 5 ASSIGNING CREDIT, DETERMINING OWNERSHIP, AND LICENSING DATA IN THE CLOUD 31 Current Promising Practices for Assigning Credit and Licensing Data, 33 Credit, Ownership, and Licensing Issues to Be Resolved, 34 6 GOVERNING, FUNDING, AND SUSTAINING CLOUD-BASED PLATFORMS 37 Current Promising Practices for Data Governance in the Cloud, 38 Issues to Be Resolved Regarding Data Use and Access, Analysis, User Training, and Platforms Sustainability, 39 PART 2 DIFFERENT TYPES OF NEUROSCIENCE DATA: CHALLENGES AND POTENTIAL OPPORTUNITIES 7 CLINICAL TRIAL AND RESEARCH DATA 45 Current Promising Practices in Clinical Trial and Research Data Sharing, 47 Issues to Be Resolved for Sharing Clinical Trial and Research Data, 48 8 GENETIC DATA 51 Current Promising Practices for Managing Genetic Data in the Cloud, 52 Issues to Be Resolved Regarding Genetic Data in the Cloud, 53 9 NEUROIMAGING DATA 55 Current Promising Practices for Neuroimaging Data in the Cloud, 56 Issues to Be Resolved to Advance Cloud-Based Neuroimaging Data Resources, 57 10 REAL-WORLD DATA 59 Current Promising Practices for Managing Real-World Data in the Cloud, 60 Issues to Be Resolved to Incorporate Real-World Data into Clinical Studies, 61 11 FUTURE DIRECTIONS 65 Technology and Methods: Progress and Challenges, 66 Training the Next Generation of Scientists, 69 PREPUBLICATION COPY—Uncorrected Proofs

CONTENTS xiii Funding: Current Commitments and Future Needs, 69 Potential Next Steps: Working Groups to Move Field Forward, 70 APPENDIXES A References 73 B Workshop Agenda 75 C Registered In-Person Attendees 81 PREPUBLICATION COPY—Uncorrected Proofs

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The cloud model of data sharing has led to a vast increase in the quantity and complexity of data and expanded access to these data, which has attracted many more researchers, enabled multi-national neuroscience collaborations, and facilitated the development of many new tools. Yet, the cloud model has also produced new challenges related to data storage, organization, and protection. Merely switching the technical infrastructure from local repositories to cloud repositories is not enough to optimize data use.

To explore the burgeoning use of cloud computing in neuroscience, the National Academies Forum on Neuroscience and Nervous System Disorders hosted a workshop on September 24, 2019. A broad range of stakeholders involved in cloud-based neuroscience initiatives and research explored the use of cloud technology to advance neuroscience research and shared approaches to address current barriers. This publication summarizes the presentation and discussion of the workshop.

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