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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.
This study was supported by contracts between the National Academy of Sciences and AbbVie, Alzheimer’s Association, American Academy of Nursing, American Association for Cancer Research, American Cancer Society, American College of Medical Genetics and Genomics, American Diabetes Association, American Heart Association, American Medical Association, American Society for Microbiology, American Society of Clinical Oncology, American Society of Human Genetics, Amgen Inc., Association of American Cancer Institutes, Association of American Medical Colleges, Blue Cross and Blue Shield Association, Bristol-Myers Squibb, Burroughs Wellcome Fund, C-Change, Celtic Therapeutics, LLLP, CeNeRx Biopharma, Centers for Disease Control and Prevention (Contract Nos. 200-2005-13434 and 200-2011-38807), CEO Roundtable on Cancer, College of American Pathologists, Critical Path Institute, Department of Health and Human Services (Contract Nos. N01-OD-4-2139 and HHSF22301026T), Department of Health and Human Services’ National Institutes of Health (NIH) (Contract No. N01-OD-4-2139) through the 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 the Air Force (Contract No. FA7014-10-P-0072), Department of Veterans Affairs (Contract No. V101(93) P-2238), Doris Duke Charitable Foundation, Eli Lilly and Company (Contract No. LRL-0028-07), Fast Forward, LLC, FasterCures, Foundation for the National Institutes of Health, Friends of Cancer Research, GE Healthcare, Inc., Genetic Alliance, GlaxoSmithKline, Health Resources and Services Administration (Contract No. HHSH250201100119P), Janssen Research & Development, LLC, Johnson & Johnson Pharmaceutical Research and Development, LLC, The Kaiser Permanente Program Offices Community Benefit II at the East Bay Community Foundation (Contract No. 20121257), Life Technologies, Lundbeck Research USA, March of Dimes Foundation, Merck & Co., Inc., Merck Research Laboratories, The Michael J. Fox Foundation for Parkinson’s Research, National Cancer Institute (Contract Nos. HHSN261200900003C and N01-OD-4-2139, TO#189), National Coalition for Health Professional Education in Genetics, National Heart, Lung, and Blood Institute (Contract No. N01-OD-4-2139, TO#275), National Human Genome Research Institute (Contract Nos. N01-OD-4-2139, TO#264 and HHSN263201200074I, TO#5), National Institute of Mental Health (Contract No. N01-OD-4-2139, TO#275), National Institute on Aging (Contract No. N01-OD-4-2139, TO#275), National Science Foundation (Contract No. OIA-0753701), National Society of Genetic Counselors, Northrop Grumman Health IT, Novartis Oncology, Novartis Pharmaceuticals Corporation, Office of Rare Diseases Research (Contract No. N01-OD-4-2139, TO#275), Oncology Nursing Society, One Mind for Research, Pfizer Inc. (Contract No. 140-N-1818071), Sanofi-Aventis, Society for Neuroscience, and Wellcome Trust. The views presented in this publication do not necessarily reflect the views of the organizations or agencies that provided support for the project.
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Suggested citation: IOM (Institute of Medicine). 2013. Sharing clinical research data: Workshop summary. Washington, DC: The National Academies Press.