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Welcome.
This is a brief guide to the main features of the
NIH CDE Repository.
The NIH CDE Repository is a free, collaborative platform for
common data elements (or “CDEs”) and forms.
To access the Repository’s full functionality,
you need a UTS account.
Sign up for a UTS account at uts.nlm.nih.gov/license.html.
It typically takes about 24-48 hours for an account request
to get approved.
The CDEs in the repository are structured, human and machine
readable definitions of data elements that have been
recommended or required by NIH Institutes and Centers and other
organizations to use in research.
It is important to note that you can browse the CDE Repository
without registering, but the functionality will be limited.
For the purposes of this video, we will browse the site as a
registered, logged-in user.
Let’s go to the CDE page.
You can browse CDEs from the grid in the middle of the page,
which displays CDEs by classification.
Classifications are groupings of CDEs that are usually,
but not always, associated with an NIH institute or center.
The number of CDEs in each classification is
noted in the grid.
You can also search for CDEs.
Enter keywords in the box, and press Enter or click the
magnifying glass.
Every CDE has a single steward or owner,
but they can be ‘Used By’ other organizations.
For example, this CDE, ‘Birth Date’ has the steward LOINC and
is used by NICHD, AHRQ, ONC, External Forms, and Women’s CRN.
You can also export CDEs in JSON or XML file formats.
Now let’s click on ‘Forms’ in the navigation bar.
Forms are simply curated sets of CDEs.
The Forms page allows you to search and browse forms
instead of individual CDEs.
The number of forms in each classification is displayed
in the grid.
Registered users can create forms using
CDEs in the repository.
Forms may be original, or they may be representations of
real-world questionnaires.
For example, the Pelvic Floor Impact Questionnaire, or PFIQ-7,
often used in the domain of women’s health,
is available in the repository.
You can export forms for data collection in a variety of
formats including JSON, XML, REDCap, and FHIR.
If you click the next link in the navigation bar, ‘Boards,’
you will see a dropdown menu with links to ‘Public Boards’
and ‘My Boards’.
Boards allow you to save CDEs or forms of interest.
They can be either private or public; anything you include in
a public board will be visible to everyone.
Private boards are only visible to you unless you
choose to share them.
To summarize what we covered in this video: the NIH CDE
Repository is a free, collaborative platform for
sharing and discovering common data elements and forms.
Repository users can create, edit, and export CDEs and forms
Repository users can use Boards to save, share, and discuss CDEs
If you would like to learn more about CDEs, the following links
will take you to more information:
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