Sharing Clinical Research Data: Workshop Summary (2013)

Chapter: Appendix B: List of Data-Sharing Initiatives

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Suggested Citation: "Appendix B: List of Data-Sharing Initiatives." Institute of Medicine. 2013. Sharing Clinical Research Data: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18267.
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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/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.

Page 102 Cite
Suggested Citation: "Appendix B: List of Data-Sharing Initiatives." Institute of Medicine. 2013. Sharing Clinical Research Data: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18267.
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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

Page 103 Cite
Suggested Citation: "Appendix B: List of Data-Sharing Initiatives." Institute of Medicine. 2013. Sharing Clinical Research Data: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18267.
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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

Page 104 Cite
Suggested Citation: "Appendix B: List of Data-Sharing Initiatives." Institute of Medicine. 2013. Sharing Clinical Research Data: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18267.
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Page 101 Cite
Suggested Citation: "Appendix B: List of Data-Sharing Initiatives." Institute of Medicine. 2013. Sharing Clinical Research Data: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18267.
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Page 102 Cite
Suggested Citation: "Appendix B: List of Data-Sharing Initiatives." Institute of Medicine. 2013. Sharing Clinical Research Data: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18267.
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Suggested Citation: "Appendix B: List of Data-Sharing Initiatives." Institute of Medicine. 2013. Sharing Clinical Research Data: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18267.
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Suggested Citation: "Appendix B: List of Data-Sharing Initiatives." Institute of Medicine. 2013. Sharing Clinical Research Data: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18267.
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