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.html
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:
- This tutorial provides 1 CE toward the Medical Library Assoociation (MLA) Data Services Specialization, Basic Level.
- For MLA CE, register to take the tutorial in Moodle.
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.
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Health Data Standards: A Common Language to Support Research and Health Care (NLM Musings from the Mezzanine, January 27, 2021): The importance of health data standards, NLM's role in supporting standards, and how CDEs play a part.
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Common Data Elements: Increasing FAIR Data Sharing (NLM Musings from the Mezzanine, June 23, 2021): An overview of the NIH CDE Governance Committee and NIH CDE endorsement process.
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The NIH Common Data Elements Repository (YouTube video, 1 minute, 2021): This brief video explains that CDEs are a health data standard supported by NLM, and directs viewers to the NIH CDE Repository.
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Collecting Data with an Eye Towards Reuse: Common Data Elements (recorded webinar, 2018): Lisa Lang, NLM, provides context and background for the use of common data elements in health sciences research. Presented as part of the series Clinical Information, Librarians and the NLM: from Health Data Standards to Better Health.
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
- Webinar recording (Webex recording, 1 hour 30 minutes, September 8, 2015)
- Agenda (MS Word)
- Final Summary (MS Word)
Presentations
- Overview of the BMIC CDE Efforts, Mike Huerta (MS Powerpoint)
- PROMIS CDEs, Ashley Wilder Smith (MS Powerpoint)
- PhenX Overview, Erin Ramos (MS Powerpoint)
- NHLBI Sickle Cell Disease CDEs, Ellen Werner (MS Powerpoint)
- NCI CDE overview, Dianne Reeves and Denise Warzel (MS Powerpoint)
- NINDS CDEs, Joanne Odenkirchen (MS Powerpoint)
- Federal Interagency Traumatic Brain Injury Research (FITBIR) informatics system, Matt McAuliffe (MS Powerpoint)
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.
- NOT-OD-15-089: Racial and Ethnic Categories and Definitions for NIH Diversity Programs and for Other Reporting Purposes (see Race OMB.1997 and Ethnicity OMB.1997)
- NOT-OD-18-116: Revision: NIH Policy and Guidelines on the Inclusion of Individuals Across the Lifespan ans Participants in Research Involving Human Subjects
- NOT-OD-15-102: Consideration of Sex as a Biological Variable in NIH-funded Research
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.
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Developing a Strategically Coordinated Registry Network (CRN) for Women’s Health Technology
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Harmonization of Various Common Data Models and Open Standards for Evidence Generation
NLM deliverables for the CDMH project:
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Data Governance Framework: A Framework for Data Management and Sustainability for Data-Sharing Networks (2020)
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Perceived Training and Data Science Support Needs for Use of Real World Data for Clinical Research: Health Science Data Access and Use Analysis Survey of NIH Intramural Researchers (2019)
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