Introduction to NINDS Common Data Element (CDE) Web site
(http://www.commondataelements.ninds.nih.gov/)
The NINDS Common Data Element (CDE) Web site includes all of the CDE products to date as well
as additional information about the CDE Project. NINDS will continue to update the site with
additional CDE materials (e.g., data dictionaries, template forms, etc.) and other updates as they
become available.
Home page (shown above)
The NINDS CDE Web site Home page provides users with a brief overview and birds-eye view of the
resources and tools available on the Web site.
Introduction to NINDS Common Data Element (CDE) Web site
(http://www.commondataelements.ninds.nih.gov/)
Navigation links/Portals:
Hyperlinks located on the bottom of the Home page (see figure below) provide users access to the Web site’s three main sections or
portals:
Standards pages - Start here to find the CDE standard sets that can be incorporated into your studies. This resource is divided into
disease specific standards as well as the General CDEs.
Tools pages- Experienced users can employ these tools to help assemble their data collection materials. These are designed to
provide additional resources to those individuals with data management and/or database experience.
Learn pages - Provides additional details about the CDE Project and how data elements are designated as NINDS CDEs. Tutorials
will eventually be added to this portal.
Introduction to NINDS Common Data Element (CDE) Web site
(http://www.commondataelements.ninds.nih.gov/)
A menu on the right side of the Home page displays the CDEs (both general and disease-specific) that are available for use as well as those
that are currently being developed by the NINDS CDE Project.
The CDEs currently available
include: General (Core- updated
Feb 2011), Epilepsy, Parkinson’s
Disease (newly released Feb 2011),
Spinal Cord Injury, Stroke and
Traumatic Brain Injury (TBI).
The additional disease-specific
standards shown to the bottom left are
currently in development.
The following CDEs will be added to
this Web site as soon as they become
available: Frontotemporal Dementia
(FTD) CDEs; Headache CDEs;
Huntington’s Disease (HD) CDEs;
Amyotrophic Lateral Sclerosis (ALS)
CDEs; Congenital Muscular Dystrophy
CDEs; Friedreich's Ataxia CDEs; Multiple
Sclerosis; and additional CDEs for other
Neuromuscular Diseases
Introduction to NINDS Common Data Element (CDE) Web site
(http://www.commondataelements.ninds.nih.gov/)
Portal Tabs (shown below)
Navigate around the site using the tabs located at the top of all Web pages.
Learn tab includes pages for the
Standards tab includes pages for the Tools tab includes pages for the
following:
following: following:
Learn Home page
Standards Home page Tools Home page
CDE Project Overview
General CDEs CDE Catalog
How data become CDEs
Amyotrophic Lateral Sclerosis (ALS) CRF Library
Glossary
CDEs* Form Builder
Sharing of data
Congenital Muscular Dystrophy (CMD)
CDEs* Collaborations
Epilepsy CDEs Tutorials (coming soon)
Friedreich's Ataxia CDEs *
Frontotemporal Dementia (FTD) CDEs*
Parkinson’s Disease CDEs
Spinal Cord Injury (SCI) CDEs
Stroke CDEs
Traumatic Brain Injury (TBI) CDEs
*CDEs in development
Introduction to NINDS Common Data Element (CDE) Web site
(http://www.commondataelements.ninds.nih.gov/)
Standards pages
The Standards portal is organized by neurological disease/disorder. Each of the Standard pages
includes the following:
Standardized data element definitions and instructions (CDE Detailed Report) intended to
expedite the development of data collection tools (see Figure1 below)
Case report form (CRF) Modules/Guidelines (see Figure 1 below)
A brief overview of how the general/disease-specific standards were developed
The CDE Standards currently available on the The additional disease-specific standards
Web site include: shown below are currently in development. The
following CDEs will be added to this Web site as
General CDEs (applicable to numerous soon as they become available:
diseases and conditions)
Epilepsy CDEs Frontotemporal Dementia (FTD) CDEs
Parkinson's Disease (PD) CDEs Headache CDEs
Spinal Cord Injury (SCI) CDEs Huntington’s Disease (HD) CDEs
Stroke CDEs Multiple Sclerosis (MS) CDEs
Traumatic Brain Injury (TBI) CDEs Neuromuscular Disease
o Amyotrophic Lateral Sclerosis (ALS)
CDEs
o Congenital Muscular Dystrophy
(CMD) CDEs (public comment under
review)
o Friedreich's Ataxia CDEs
Introduction to NINDS Common Data Element (CDE) Web site
(http://www.commondataelements.ninds.nih.gov/)
[Figure 1] http://www.commondataelements.ninds.nih.gov/General.aspx
Figure 1 Relevant Terminology:
Domain – categories of data common to clinical research studies that are used to organize
the CDE materials.
Sub-domain– a lower-level component of a domain, used to further categorize or classify
the CDE materials.
CRF Module – logical organization of CDEs for data collection. Each module contains a
template case report form (CRF) and instructions for data collection.
Guideline –an instructional document that provides further details about the CDE materials
or provides justification for why certain elements or standardized instruments/measures
were included in the CDE recommendations. Unlike a CRF Module, the Guideline does not
contain individual CDEs.
Introduction to NINDS Common Data Element (CDE) Web site
(http://www.commondataelements.ninds.nih.gov/)
CDE Detailed Report – contains detailed information about the selected CDEs; including
CDE definition, permissible values/codes, additional instructions, references, etc. Another
name for a CDE Detailed Report is Data Dictionary.
Other information included on the Standards pages are (see figure 2 below):
Summary of Updates
History and Acknowledgements about the CDE Working Group
Online feedback form to submit comments and suggestions
Additional references
[Figure 2] http://www.commondataelements.ninds.nih.gov/General.aspx
Introduction to NINDS Common Data Element (CDE) Web site
(http://www.commondataelements.ninds.nih.gov/)
Tools pages
The Tools portal includes tools that combine the content from the pages of the Standards portal.
CDE Catalog – browse the universe of all CDEs available to users.
(http://www.commondataelements.ninds.nih.gov/CDE.aspx)
CRF Library – searchable repository of all CRF Modules and various Guideline
documents that have been created through the NINDS CDE Project.
(http://www.commondataelements.ninds.nih.gov/CRF.aspx)
Form Builder – assists data managers to create data dictionaries for their
customized study forms.
(http://www.commondataelements.ninds.nih.gov/CRF.aspx?source=formBuilder)
CDE Catalog: this tool allows users to search the full universe to isolate a subset of the CDEs (e.g.,
all stroke-specific CDEs related to imaging, all pediatric epilepsy CDEs, etc.) and download details
about those CDEs.
Introduction to NINDS Common Data Element (CDE) Web site
(http://www.commondataelements.ninds.nih.gov/)
CDE Catalog result grid: users can view their CDE search results and are able to generate CDE
Detailed Reports and CDE Snapshot Reports.
CDE Snapshot Report: contains the most important information about the CDE. The CDE Detailed
Report contains additional information not included in this report. Please refer to the CDE Snapshot
Report example on the next page.
Introduction to NINDS Common Data Element (CDE) Web site
(http://www.commondataelements.ninds.nih.gov/)
Introduction to NINDS Common Data Element (CDE) Web site
(http://www.commondataelements.ninds.nih.gov/)
CDE Detailed report: contains all the detailed information or meta-data about the selected CDEs. Unlike the CDE Snapshot report that
just includes the most important details about a single CDE, the CDE Detailed report includes all CDEs found through the search of the CDE
Catalog tool and includes additional classification information.
Introduction to NINDS Common Data Element (CDE) Web site
(http://www.commondataelements.ninds.nih.gov/)
CRF Library: this tool allows users to search the universe of all CRF modules and guidelines and
find documents of interest.
CRF Library result grid: users can view their search results and choose to view and/or download
the CRF modules/guidelines and their corresponding data dictionaries.
CRF Module and Guideline
document page – Users have access
to the CRF module/guideline and its
data dictionary for viewing and
downloading
Introduction to NINDS Common Data Element (CDE) Web site
(http://www.commondataelements.ninds.nih.gov/)
Form Builder: this tool allows users to assemble CDEs to build a data dictionary for a customized
case report form (CRF) or “form”.
The form builder was designed to have the same functions and content of the CRF Library and CDE
Catalog while having additional features to allow users to create their form by customizing existing
collections of CDEs (i.e., CRF Modules).
CRF Library for Form Builder: users can begin building a form by selecting the collection of CDEs
from one or more existing CRF modules.
Introduction to NINDS Common Data Element (CDE) Web site
(http://www.commondataelements.ninds.nih.gov/)
CDE Catalog for Form Builder: after having chosen one or more CRF modules from the CRF
Library for Form Builder page, users can add or delete CDEs from their Form Builder cart.
Introduction to NINDS Common Data Element (CDE) Web site
(http://www.commondataelements.ninds.nih.gov/)
Form Builder Cart: shows the CDEs that have been chosen to build the customized form. Users are
able to download the data dictionary for their customized form when they are finished “shopping”
for CDEs.
Introduction to NINDS Common Data Element (CDE) Web site
(http://www.commondataelements.ninds.nih.gov/)
Learn pages
The Learn portal provides resources that allow you to read and learn more about the NINDS CDE
Project and related efforts. The portal includes:
An overview of the CDE Project
Explanation of how data become CDEs
Glossary of key terms
Information about NINDS’ requirements to share study data
Description of other groups (e.g., caBIG) NINDS is collaborating with in its CDE Project
In the near future, this portal will also contain tutorials that provide trainings about the CDEs and
offer instructions on how to navigate the Web site.
Tips for Using the CDEs
When researching CDEs to incorporate into your study design, we recommend that you first
review the General CDE Standards page
(http://www.commondataelements.ninds.nih.gov/General.aspx) and then visit the disease-
specific page most relevant to your study.
The General CDEs and the disease-specific CDEs are classified using three different levels: Core,
Supplemental, and Exploratory. The Glossary on the Web site
(http://www.commondataelements.ninds.nih.gov/Glossary.aspx) defines these three terms in
detail. It is important to note that all NINDS-funded studies are strongly encouraged to collect
the Core CDEs.
If you plan to collect a CDE in your study please use the definition and permissible values/
codes specified for the element. The NINDS CDE Project will not accomplish its goal of
standardization if users continue to use idiosyncratic definitions and permissible values.
Provide feedback about the CDEs, their supporting documentation and the Web site. The
NINDS CDE Team (NINDSCommonData@kai-research.com) welcomes feedback in any format
you are willing to provide it (e.g., using the online feedback form on the Web site, sending an
email, talking to us over the phone, etc.). Most of the CDEs are only version 1.0 and they will
only continue to improve and become more valuable resources with feedback from the research
community.