Table 1.

NCI Cohort Consortium: cancer cohort databases and data repositories

Database/repositoryAcronymAccessDescription
Cancer Epidemiology Descriptive Cohort DatabaseCEDCDPublic useSearchable database that contains general descriptive information about cohort studies studying cancer incidence and mortality, e.g., type of data collected at baseline, numbers of incident cancers by site, and biospecimen information.
Cohort Metadata RepositoryCMRRestricted useaSearchable database that documents data harmonization efforts across cohorts. Researchers can view metadata (variable names, formats, codes, descriptions) across cohorts, and view harmonized variables from specific projects and the specifications used to create them.
Cancer Epidemiology Data RepositoryCEDRControlled accessaInvestigators will be able to deposit individual-level deidentified nongenomic data from observational cancer epidemiology datasets. Datasets can be updated with follow-up information on cancer incidence and mortality and could be individually linked to genomic data in NIH's database of Genotypes and Phenotypes (dbGaP).
  • aBecause the Consortium is a voluntary pooling by cohorts from many countries that need to meet their local legal, ethics, and funder-mandated policies on subject privacy and data sharing, as well as meeting the signed consent and participant information constraints of their cohort-specific recruitment, these consortial databases are restricted or have controlled access.