The Cancer Epidemiology Descriptive Cohort Database: A Tool to Support Population-Based Interdisciplinary Research

Background: We report on the establishment of a web-based Cancer Epidemiology Descriptive Cohort Database (CEDCD). The CEDCD's goals are to: enhance awareness of resources, facilitate interdisciplinary research collaborations, and support existing cohorts for the study of cancer-related outcomes. Methods: Comprehensive descriptive data were collected from large cohorts established to study cancer as primary outcome, using a newly developed questionnaire. These included an inventory of baseline and follow-up data, biospecimens, genomics, policies and protocols. Additional descriptive data extracted from publicly available sources were also collected. This information was entered in a querable and publicly accessible database. We summarized the descriptive data across cohorts and reported the characteristics of this resource. Results: As of December 2015, the CEDCD includes data from 46 cohorts representing more than 6.5 million individuals (29% ethnic/racial minorities). Overall, 78% of the cohorts have collected blood at least once, 57% at multiple time points, and 46% collected tissue samples. Genotyping has been performed by 67% of the cohorts, while 46% have performed whole genome or exome sequencing in subsets of enrolled individuals. Information on medical conditions other than cancer have been collected in over 50% of the cohorts. More than 600,000 incident cancer cases and over 40,000 prevalent cases are reported, with 24 cancer sites represented. Conclusions: The CEDCD assembles detailed descriptive information on a large number of cancer cohorts in a searchable database. Impact: Information from the CEDCD may assist the interdisciplinary research community by facilitating identification of well-established population resources and large-scale collaborative and integrative research.