Cancer Epidemiology Data Repository (CEDR)


Background

The National Institutes of Health (NIH) and the National Cancer Institute (NCI) are committed to data sharing as a way to expedite research and facilitate collaborative science, while ensuring appropriate protections for research involving human data and oversight of research conduct, data quality, data management, data sharing, and data use. There are currently more than 65 NIH-sponsored data sharing repositories.

In 2016, the Cancer MoonshotSM Blue Ribbon Panel Report highlighted the critical need for systems and infrastructure to enhance data sharing "to enable all participants across the cancer research and care continuum to contribute, access, combine and analyze diverse data that will enable new discoveries and lead to lowering the burden of cancer in our country."

In an effort to broaden access and facilitate efficient data sharing, the Epidemiology and Genomics Research Program (EGRP) has created the Cancer Epidemiology Data Repository (CEDR), a centralized, controlled-access database, where Investigators can deposit individual-level de-identified observational cancer datasets. CEDR is modeled after similar NIH-supported data repositories, (e.g., BioLINCC), which have enabled collaboration and accelerated scientific discovery.

Investigators will be able to deposit non-genomic data from observational cancer epidemiology studies into CEDR, which could be linked to genomic data in NIH's database of Genotypes and Phenotypes (dbGaP). Released data will not contain information that readily allows identification of an individual participant, consistent with NCI policies. Data will be shared in concordance with specific data use agreements for each study. Researchers requesting repository data will provide regular progress reports and notify EGRP of manuscripts published with data accessed from CEDR, with the appropriate data citation.

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Frequently Asked Questions

  • What is CEDR?
    CEDR is a controlled-access data repository that will enable individual level data sharing for observational cancer epidemiology data.

  • Can existing datasets be updated?
    Yes, datasets can be deposited and updated to include additional information with additional collected data and follow-up information for cancer incidence and mortality endpoints.

  • When will CEDR be operational?
    CEDR is ready to accept data.

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Contact

  • Joanne Elena, Ph.D., M.P.H., Program Director, Clinical and Translational Epidemiology Branch, EGRP

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