Data Documentation and Metadata
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      Using Common Data Elements (CDEs)

      A guide to finding and utilizing CDEs to standardize your research data

      What are Common Data Elements (CDEs)?

      The National Institutes of Health (NIH) has created a repository of Common Data Elements to support standardization in data collection. According to the NIH, “A Common Data Element (CDE) is a standardized, precisely defined question, paired with a set of allowable responses, used systematically across different sites, studies, or clinical trials to ensure consistent data collection.”

      A CDE is an individual question, but CDEs can be combined into “forms,” similar to standardized survey instruments.

      Why Use CDEs?

      Using CDEs allows your research data to be easily combined with data from other institutions, since all of the researchers are asking standardized questions. As with a meta-analysis, data from multiple studies can be combined using CDEs to create stronger evidence.

      Moreover, some NIH Institutes, Centers, and Offices (ICOs) are now requiring use of CDEs in their funded studies. For example, the National Institute of Mental Health (NIMH) requires that researchers address use of CDEs in their Data Management and Sharing Plan.

      How Can I Find CDEs?

      CDEs are available via the NIH CDE Repository. The repository provides three ways to search:

      1. NIH-Endorsed CDEs: Searches individual CDEs (questions). These CDEs have been reviewed by a panel for quality.
      2. All CDEs: Searches all CDEs in the repository.
      3. Forms: Searches through complete forms (questionnaires).

      Individual CDEs

      Suppose you want to find a CDE to ask your research participants about their address. You would search the NIH-Endorsed CDEs for “address.”

      In the results page, there is an entry for “Full Residential Address.” Click on it to see the full record.

      In the top of the record, there is the question text (to ask the participant) and a definition of the CDE. You can also “Pin to Board” – that is, save this question to your account with the CDE repository.

      Forms

      Imagine you want to find a survey about alcohol use to use in a study. First, you would switch the search on the homepage to “Search Forms” and search for “alcohol.”

      INSERT IMAGE FROM HERE: https://docs.google.com/document/d/1nzkuDgReViYvjsr1GVnjiLshjYpKk5u2Y8e-G4x_6M8/edit?usp=sharing

      In the search results, you can narrow your results by ICO or collection. Narrow the results to NIDA (National Institute on Drug Abuse).

      INSERT IMAGE FROM HERE: https://docs.google.com/document/d/1nzkuDgReViYvjsr1GVnjiLshjYpKk5u2Y8e-G4x_6M8/edit?usp=sharing

      From the results, select “AUDIT Interview version.”


      On the top of the record for this form, there is a preview of the form itself. At the bottom, there is metadata about the form, including a description and copyright status.


      At the top of the record, there are several buttons. As with a CDE, you can pin this form to a board. By clicking on the CDEs button, you can view the records for the individual CDEs (questions) that make up the form. Under preview options, you can create a printable version of the form.

      Additional Resources

      Source

      National Library of Medicine. “NIH Common Data Elements (CDE) Repository.” Accessed January 23, 2024. https://cde.nlm.nih.gov/home.

       

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