B

List of Data-Sharing Initiatives1

Alzheimer’s Disease Neuroimaging Initiative (ADNI)

http://adni-info.org

Analgesic Clinical Trials Innovation, Opportunities and Networks (ACTION) Initiative

http://www.fda.gov/AboutFDA/PartnershipsCollaborations/PublicPrivatePartnershipProgram/ucm231130.htm

Arch2POCM (Archipelago to Proof of Clinical Mechanism [Phase IIa])

http://sagebase.org/WP/arch

Biogrid Australia

http://www.biogrid.org.au/wps/portal

Biomarkers Consortium Project on Adiponectin

http://www.biomarkersconsortium.org/press_release_adiponectin_predictive_biomarker.php

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1This list of data-sharing projects is not an exhaustive list, and inclusion does not denote endorsement. The list includes projects that share different types of data and health information (e.g., genetic information, observational data, etc.) as potential sources of best practices/lessons learned that may be applicable to initiatives focused on sharing data from preplanned interventional studies of human subjects.



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B List of Data-Sharing Initiatives1 Alzheimer’s Disease Neuroimaging Initiative (ADNI) http://adni-info.org Analgesic Clinical Trials Innovation, Opportunities and Networks (ACTION) Initiative http://www.fda.gov/AboutFDA/PartnershipsCollaborations/PublicPrivate PartnershipProgram/ucm231130.htm Arch2POCM (Archipelago to Proof of Clinical Mechanism [Phase IIa]) http://sagebase.org/WP/arch Biogrid Australia http://www.biogrid.org.au/wps/portal Biomarkers Consortium Project on Adiponectin http://www.biomarkersconsortium.org/press_release_adiponectin_ predictive_biomarker.php 1 This list of data-sharing projects is not an exhaustive list, and inclusion does not denote endorsement. The list includes projects that share different types of data and health information (e.g., genetic information, observational data, etc.) as potential sources of best practices/lessons learned that may be applicable to initiatives focused on sharing data from preplanned interventional studies of human subjects. 101

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102 SHARING CLINICAL RESEARCH DATA Biosense (CDC) http://www.cdc.gov/biosense caBIG (Cancer Biomedical Informatics Grid) http://cabig.cancer.gov CAMD (Coalition Against Major Diseases) and C-Path Alzheimer’s Database http://www.c-path.org/News/CDISCTAStds%20PR-24June2012.pdf Cancer Commons http://cancercommons.org/wp-content/themes/cancer_commons/docs/ cancer_commons_whitepaper.pdf http://www.cancercommons.org/about CDC’s Chronic Fatigue Syndrome Wichita Clinical Study http://www.cdc.gov/rdc/B1DataType/Dt132.htm http://www.cfids.org/advocacy/testimony-vernon-oct2008.pdf Clinical Trial Comparator Arm Partnership (CTCAP) http://sagebase.org/partners/CTCAP.php ClinicalTrials.gov http://www.nlm.nih.gov/pubs/factsheets/clintrial.html The database of Genotypes and Phenotypes (dbGaP) http://www.ncbi.nlm.nih.gov/gap DataSphere Project (CEO Roundtable on Cancer) http://ceo-lsc.org/projectdatasphere The “ePlacebo” Database http://www.genome.gov/19518664 Informatics for Integrating Biology and the Bedside (i2b2) https://www.i2b2.org Innovative Medicines Initiative (IMI) European Medical Information Framework (EMIF) http://www.imi.europa.eu/content/home

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APPENDIX B 103 International Severe Adverse Events Consortium (iSAEC) http://www.saeconsortium.org Kaiser Permanente Research Program on Genes, Environment, and Health (RPGEH) and UCSF Biobank http://www.dor.kaiser.org/external/DORExternal/rpgeh/index.aspx Mini-Sentinel http://mini-sentinel.org/about_us NEWMEDS http://www.newmeds-europe.com One Mind Initiative http://1mind4research.org/programs Parkinson’s Progression Markers Initiative (PPMI) http://ppmi-info.org PatientsLikeMe http://www.patientslikeme.com/about Sage Bionetworks http://sagebase.org/info/index.php Structural Genomics Consortium (SGC) http://www.thesgc.org tranSMART http://www.transmartproject.org/index.html

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