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Sharing Clinical Research Data Workshop Summary (2013) / Chapter Skim
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Appendix B: List of Data-Sharing Initiatives
Pages 101-104

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From page 101...
... 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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From page 102...
... 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)
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From page 103...
... 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)
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Key Terms

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  • preplanned interventional
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  • arm partnership
  • fatigue syndrome
  • health information
  • list includes
  • interventional studies

  • initiatives focused
  • european medical
  • syndrome wichita
  • clinical trial
  • comparator arm

  • clinical study
  • chronic fatigue
  • ucsf biobank
  • markers initiative
  • human subjects

  • org innovative
  • org patientslikeme
  • org transmart
  • php structural
  • pdf clinical


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