메뉴 건너뛰기




Volumn 22, Issue 3, 2014, Pages 317-321

Data sharing in large research consortia: Experiences and recommendations from ENGAGE

Author keywords

biobanks; consortia; data sharing; genetic research

Indexed keywords

DATABASES, FACTUAL; DATABASES, GENETIC; EUROPE; GENOMICS; HEALTH PLANNING GUIDELINES; INFORMATION DISSEMINATION; INTERNATIONAL COOPERATION; MOLECULAR EPIDEMIOLOGY; SOCIETIES, SCIENTIFIC;

EID: 84894378127     PISSN: 10184813     EISSN: 14765438     Source Type: Journal    
DOI: 10.1038/ejhg.2013.131     Document Type: Article
Times cited : (56)

References (31)
  • 1
    • 70249116045 scopus 로고    scopus 로고
    • Prepublication data sharing
    • Birney E, Hudson TJ, Green ED et al: Prepublication data sharing. Nature 2009; 461: 168-170.
    • (2009) Nature , vol.461 , pp. 168-170
    • Birney, E.1    Hudson, T.J.2    Green, E.D.3
  • 2
    • 79960288854 scopus 로고    scopus 로고
    • Towards a data sharing Code of Conduct for international genomic research
    • Knoppers BM, Harris JR, Tasse AM et al: Towards a data sharing Code of Conduct for international genomic research. Genome Med 2011; 3: 46.
    • (2011) Genome Med , vol.3 , pp. 46
    • Knoppers, B.M.1    Harris, J.R.2    Tasse, A.M.3
  • 3
    • 59849106432 scopus 로고    scopus 로고
    • National Institutes of Health
    • National Institutes of Health. NIH Data Sharing Policy, 2007.
    • (2007) NIH Data Sharing Policy
  • 6
    • 84859488836 scopus 로고    scopus 로고
    • On sharing quantitative trait GWAS results in an era of multiple-omics data and the limits of genomic privacy
    • Im HK, Gamazon ER, Nicolae DL, Cox NJ: On sharing quantitative trait GWAS results in an era of multiple-omics data and the limits of genomic privacy. Am J Hum Genet 2012; 90: 591-598.
    • (2012) Am J Hum Genet , vol.90 , pp. 591-598
    • Im, H.K.1    Gamazon, E.R.2    Nicolae, D.L.3    Cox, N.J.4
  • 8
    • 84859922074 scopus 로고    scopus 로고
    • The Tension between Data Sharing and the Protection of Privacy in Genomics Research
    • Kaye J: The Tension Between Data Sharing and the Protection of Privacy in Genomics Research. Annu Rev Genomics Hum Genet 2012; 13: 415-431.
    • (2012) Annu Rev Genomics Hum Genet , vol.13 , pp. 415-431
    • Kaye, J.1
  • 10
    • 79959882088 scopus 로고    scopus 로고
    • Ethical and practical challenges of sharing data from genome-wide association studies: The eMERGE Consortium experience
    • McGuire AL, Basford M, Dressler LG et al: Ethical and practical challenges of sharing data from genome-wide association studies: the eMERGE Consortium experience. Genome Res 2011; 21: 1001-1007.
    • (2011) Genome Res , vol.21 , pp. 1001-1007
    • McGuire, A.L.1    Basford, M.2    Dressler, L.G.3
  • 12
    • 67650382229 scopus 로고    scopus 로고
    • Recommendations from the 2008 International Summit on Proteomics Data Release and Sharing Policy: The Amsterdam principles
    • Rodriguez H, Snyder M, Uhlen M et al: Recommendations from the 2008 International Summit on Proteomics Data Release and Sharing Policy: the Amsterdam principles. J Proteome Res 2009; 8: 3689-3692.
    • (2009) J Proteome Res , vol.8 , pp. 3689-3692
    • Rodriguez, H.1    Snyder, M.2    Uhlen, M.3
  • 13
    • 84894373000 scopus 로고    scopus 로고
    • European Network for Genetic and Genomic Epidemiology ENGAGE, 2012
    • European Network for Genetic and Genomic Epidemiology ENGAGE, 2012.
  • 15
    • 79951530129 scopus 로고    scopus 로고
    • SAIL-a software system for sample and phenotype availability across biobanks and cohorts
    • Gostev M, Fernandez-Banet J, Rung J et al: SAIL-a software system for sample and phenotype availability across biobanks and cohorts. Bioinformatics 2011; 27: 589-591.
    • (2011) Bioinformatics , vol.27 , pp. 589-591
    • Gostev, M.1    Fernandez-Banet, J.2    Rung, J.3
  • 16
    • 84894325950 scopus 로고    scopus 로고
    • ENGAGE Data Access Catalogue, 2013
    • ENGAGE Data Access Catalogue, 2013.
  • 17
    • 84894380288 scopus 로고    scopus 로고
    • Public Population Projects in Genomics and Society (P3G), 2011
    • Public Population Projects in Genomics and Society (P3G), 2011.
  • 18
    • 84894369917 scopus 로고    scopus 로고
    • European Genome-Phenome Archive (EGA), 2012
    • European Genome-Phenome Archive (EGA), 2012.
  • 19
    • 84894346511 scopus 로고    scopus 로고
    • European Bioinformatics Institute (EMBL-EBI), 2012
    • European Bioinformatics Institute (EMBL-EBI), 2012.
  • 21
    • 84855949214 scopus 로고    scopus 로고
    • Data sharing: Not as simple as it seems
    • Pearce N, Smith AH: Data sharing: not as simple as it seems. Environ Health 2011; 10: 107.
    • (2011) Environ Health , vol.10 , pp. 107
    • Pearce, N.1    Smith, A.H.2
  • 22
    • 79952503255 scopus 로고    scopus 로고
    • Phenotype harmonization and crossstudy collaboration in GWAS consortia: The GENEVA experience
    • Bennett SN, Caporaso N, Fitzpatrick AL et al: Phenotype harmonization and crossstudy collaboration in GWAS consortia: the GENEVA experience. Genet Epidemiol 2011; 35: 159-173.
    • (2011) Genet Epidemiol , vol.35 , pp. 159-173
    • Bennett, S.N.1    Caporaso, N.2    Fitzpatrick, A.L.3
  • 23
    • 84864628956 scopus 로고    scopus 로고
    • Data sharing in the postgenomic world: The experience of the International Cancer Genome Consortium (ICGC) Data Access Compliance Office (DACO)
    • Joly Y, Dove ES, Knoppers BM, Bobrow M, Chalmers D: Data sharing in the postgenomic world: the experience of the International Cancer Genome Consortium (ICGC) Data Access Compliance Office (DACO). PLoS Comput Biol 2012; 8: e1002549.
    • (2012) PLoS Comput Biol , vol.8
    • Joly, Y.1    Dove, E.S.2    Knoppers, B.M.3    Bobrow, M.4    Chalmers, D.5
  • 24
    • 84894322262 scopus 로고    scopus 로고
    • BioSHaRE-EU (Biobank Standardisation and Harmonisation for Research Excellence in the European Union) 2012
    • BioSHaRE-EU (Biobank Standardisation and Harmonisation for Research Excellence in the European Union), 2012.
  • 25
    • 84894377418 scopus 로고    scopus 로고
    • PhenX Toolkit, 2013
    • PhenX Toolkit, 2013.
  • 26
    • 84894347818 scopus 로고    scopus 로고
    • Data Schema and Harmonization Platform for Epidemiological Research (DataSHa-PER), 2012
    • Data Schema and Harmonization Platform for Epidemiological Research (DataSHa-PER), 2012.
  • 27
    • 79957605208 scopus 로고    scopus 로고
    • The role of a Bioresource Research Impact Factor as an incentive to share human bioresources
    • Cambon-Thomsen A, Thorisson GA, Mabile L et al: The role of a Bioresource Research Impact Factor as an incentive to share human bioresources. Nat Genet 2011; 43: 503-504.
    • (2011) Nat Genet , vol.43 , pp. 503-504
    • Cambon-Thomsen, A.1    Thorisson, G.A.2    Mabile, L.3
  • 28
    • 84894362075 scopus 로고    scopus 로고
    • BBMRI-LPC (Large Prospectives Cohorts), 2013
    • BBMRI-LPC (Large Prospectives Cohorts), 2013.
  • 29
    • 78149243538 scopus 로고    scopus 로고
    • DataSHIELD: Resolving a conflict in contemporary bioscience-performing a pooled analysis of individual-level data without sharing the data
    • Wolfson M, Wallace SE, Masca N et al: DataSHIELD: resolving a conflict in contemporary bioscience-performing a pooled analysis of individual-level data without sharing the data. Int J Epidemiol 2010; 39: 1372-1382.
    • (2010) Int J Epidemiol , vol.39 , pp. 1372-1382
    • Wolfson, M.1    Wallace, S.E.2    Masca, N.3
  • 30
    • 84894331031 scopus 로고    scopus 로고
    • Bioresource Research Impact Factor (BRIF), 2012
    • Bioresource Research Impact Factor (BRIF), 2012.
  • 31
    • 84894310646 scopus 로고    scopus 로고
    • Open Researcher and Contributor ID (ORCID), 2012
    • Open Researcher and Contributor ID (ORCID), 2012.


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.