Abstract
Abstract Carefully designed observational studies have recognized value and efficiency in determining associations between exposures and outcomes and thereby evaluating health care. In particular, longitudinal cohorts have served as an essential research infrastructure for studies producing a wealth of information on disease etiology and prevention. The onset of the ‘omics age has compelled many funding agencies to foster collaborations across existing large cohorts, to design studies large enough to address the dynamic and interactive nature of the factors underlying common diseases. There is currently an ongoing discussion in the scientific community of whether or not observational studies should be registered, and if so what the scientific and practical benefits of the implementation would be. Cohorts are the backbone of observational studies, and making their descriptive data rapidly available to the scientific community through a centralized descriptive database is the first step necessary to increase transparency, scientific quality and collaboration. We have created the Cancer Epidemiology Descriptive Cohort Database (CEDCD) to assist the research community in identifying and accessing population resources, with the intention of maximizing the efficiency and effectiveness of existing cohorts and targeting areas of needs when establishing new ones. This public database includes many details, including cohort profiles and investigator contact information, study design and eligibility criteria, enrollment numbers broken down by race/ethnicity/gender, number and types of biospecimens and cancer diagnoses, policies, protocols and questionnaires, publications and funded research projects, and links to the cohort websites and related resources. The initial phase of this database will include cohorts focusing on cancer as their primary outcome, specifically those funded by NCI's EGRP and members of NCI's Cohort Consortium that have more than 10,000 subjects enrolled (healthy individuals or cancer survivors). The CEDCD is serving as a model for a parallel world-wide cohort registration project. The creation of a querable web-based tools for direct population of this descriptive database, which will provide a valuable resource for the scientific community in the planning and design of large, cooperative observational studies is in progress. Citation Format: Crystal Lane, Amy Kennedy, Michelle Brotzman, Amy Miller, Gabriel Lai, Muin Khoury, Daniela Seminara. Supporting cancer epidemiology research through cohort registration: NCI's cancer epidemiology cohort descriptive database. [abstract]. In: Proceedings of the 106th Annual Meeting of the American Association for Cancer Research; 2015 Apr 18-22; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Res 2015;75(15 Suppl):Abstract nr LB-195. doi:10.1158/1538-7445.AM2015-LB-195
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