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Resources

See also: Health Information Technology and Health Data Standards at NLM

NIH CDE Workshop

NIH hosted a hybrid workshop on March 6-7, 2024, entitled Advancing the Use and Development of Common Data Elements in Research.

A workshop summary is available from the website, and recordings of the sessions are linked on the agenda page.

Dr. Susan Gregurick from the Office of Data Science Strategy welcomed participants, and NIH Director Dr. Monica Bertagnolli gave the opening keynote. Over two days, speakers from NIH, other government agencies (CDC, FDA, ONC), academia, associations, and the private sector presented and led discussions on:

  • The Value of Common Data Elements (CDEs)
  • Current NIH Resources for CDEs
  • Overcoming Barriers in CDE Adoption, Mapping, and Use in Community Research
  • Technical Implementation Aspects of Mapping, Transformation and Harmonization
  • Approaches to Improve Interoperability
  • Use Cases for Preparing and Applying CDEs for Intelligent Technologies

 

CDE Training from NLM 

NLM has several CDE training options to meet your needs: 

On-Demand Training: Standardize Your Research Data with the NIH Common Data Element Repository 

Our popular class is now available in an on-demand format. Through recorded demonstrations and hands-on exercises, this course will introduce you to common data elements (CDEs) and the NIH Common Data Element Repository (CDE-R). The course begins with an in-depth introduction to what CDEs are and examples of how researchers are already using them. Then, you’ll see how to search the repository and practice searching on your own.  

Consider taking this course if you: 

  • Want to standardize the data you collect so it can be easily shared with and reused by colleagues and other researchers 
  • Have been awarded a grant that requires the use of CDEs 
  • Have heard that CDEs can be part of a compliant data management and sharing plan 
  • Assist researchers with the research data management lifecycle 

Register and immediately access the course here: https://www.nnlm.gov/training/class/standardize-your-research-data-nih-common-data-element-repository-demand 

If you do not already have an account with the Network of the National Library of Medicine, a free account is required to register and access the course. 

Continuing Education: 

  • This class has been approved for 1.5 Medical Library Association (MLA) continuing education credits. 
  • This class qualifies for Medical Library Association (MLA) Data Services Specialization (DSS).

On-demand recording: Standardize Your Research Data with the NIH Common Data Elements Repository 

This class was recorded live on October 4, 2022.

Through live demonstrations and hands-on exercises, this course will introduce you to common data elements (CDEs) and the NIH Common Data Element Repository (CDE-R). The course begins with an in-depth introduction to what CDEs are and examples of how researchers are already using them. Then, you’ll see how to search the repository and practice searching on your own. 

Consider taking this course if you:

  • Want to standardize the data you collect so it can be easily shared with colleagues and other researchers
  • Have been awarded a grant that requires the use of CDEs
  • Have heard that CDEs can be part of a compliant data management and sharing plan
  • Assist researchers with the research data management lifecycle

Start here: https://www.nlm.nih.gov/oet/ed/cde/2022_10_cde-r_training.htm
Length: 90 minutes  

Tutorial: Common Data Elements: Standardizing Data Collection

When: on-demand, self-paced tutorial
Length: one hour
Start here: https://www.nlm.nih.gov/oet/ed/cde/tutorial/index.html 
Continuing education: 

Making research data Findable, Accessible, Interoperable and Reusable (FAIR) starts well before data collection. Designing studies with common data elements (CDEs) can enable data sharing and reuse. This course can help you understand how you can support the use of CDEs in creating FAIR data.

 

NLM Videos and Blog Posts about CDEs

These videos and blog posts promote CDEs and the NIH CDE Repository. 

 

APIs for the NIH CDE Repository 

NLM provides five APIs to the public for retrieving data from the NIH CDE Repository:

  • Three APIs for Common Data Elements
  • Two APIs for Forms

Find all our APIs and documentation on the API page

 

Exploring the Role of CDEs in NIH Data Sharing (2015 workshop)

In 2015, as part of the NIH Big Data to Knowledge (BD2K) Common Fund initiative, BD2K, BMIC, NLM, NCI, NCATS, and NIEHS jointly organized a workshop for NIH staff to explore the role of CDEs in NIH data sharing. 

Workshop artifacts 

Presentations

 

NIH Policy Notices

CDEs can be a part of a data management and sharing plan that complies with the NIH Policy for Data Management and Sharing, effective January 2023. See sharing.nih.gov for more information. 

The following NIH Policy Notices relate to common data elements, some of which can be found within the Common Data Elements Repository.

 

CDEs in Biomedical Research

PubMed searches

Below are recent articles in PubMed that mention common data elements. Click the linked search terms to see all results.  

NIH RePORTer 

The NIH Research Portfolio Online Reporting Tools (RePORTer) provides access to reports, data, and analyses of NIH research activities, including NIH expenditures and results of NIH-supported research.

Search: “common data elements” or “common data element” in the Title, Project Terms, or Abstract: https://reporter.nih.gov/

 

Past Collaborations

Through the Patient-Centered Outcomes Research Trust Fund (PCORTF) at the Department of Health and Human Services (HHS) Office of the Assistant Secretary for Planning and Evaluation (ASPE), NLM participated in two interagency collaborations for data management.

NLM deliverables for the CDMH project:

 

CDE Portal (retired)

The NIH CDE Repository has consolidated CDE resources from the CDE Portal here on the NIH CDE Repository website. An archived version of the NIH CDE Portal is available on the NLM archive site: https://wayback.archive-it.org/org-350/20200602040150/https://www.nlm.nih.gov/cde/index.html