CDE Catalog | NINDS Common Data Elements

***Please contact NINDS CDE team (NINDSCDE@emmes.com) in case you encounter any search difficulties.***

The CDE Catalog is a directory of the available NINDS CDEs. Users can search the Catalog to isolate a subset of the CDEs (e.g., all stroke-specific CDEs, etc.), and to view and download details about the CDEs.

Select any filter below to search the CDE Catalog.

For best results, clear form between searches. In addition, when specifying NeuroRehab, Sport-Related Concussion (SRC) or Traumatic Brain Injury (TBI) as the Disease, please select a Subdisease as well.

NeuroRehab Comprehensive includes all NeuroRehab CDE recommendations. NeuroRehab General includes all NeuroRehab CDE recommendations that are not disease specific. All other NeuroRehab Subdiseases include recommendations specific to existing NINDS CDE project disorders.

Choose your Time Frame for your SRC study (Acute (time of injury until 72 hours), Subacute (after 72 hours to 3 months), and Persistent/Chronic (3 months and greater post-concussion) or Comprehensive if your study falls across the study time frames.

Choose your type of TBI study (Acute Hospitalized, Concussion/Mild TBI, Moderate/Severe TBI: Rehabilitation, or Epidemiology) or Comprehensive if your study falls outside of the study types or incorporates aspects of more than one type of study.

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CRF Name

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The search results below can be downloaded by clicking the checkboxes on the far left side of the table. Select the header checkbox to select all CDEs listed on the first page. Then choose CDE Detailed Report from the Choose an operation dropdown menu.
CDE ID	CDE Name	Definition	Classification	CRF Name	Copyrighted or trademarked	Disease Name	Subdisease Name
C19931	Biopsy and autopsy tubular aggregates estimated percentage value	Tubular aggregates estimated percentage value	Supplemental	Muscle Biopsies and Autopsy Tissue	False	Congenital Muscular Dystrophy	Congenital Muscular Dystrophy (CMD)
C19843	Medical history emergency room visits since last visit indicator	Indicator of emergency room visits since last study visit	Supplemental	Interval Medical History	False	Congenital Muscular Dystrophy	Congenital Muscular Dystrophy (CMD)
C19979	Immunohistochemistry CD8 presence status	The status of the presence of CD8 in immunohistochemistry	Supplemental	Muscle Biopsies and Autopsy Tissue	False	Congenital Muscular Dystrophy	Congenital Muscular Dystrophy (CMD)
C19741	Goniometry wrist measurement	Measurement in degrees of the passive range of motion for wrist	Supplemental	Goniometry	False	Congenital Muscular Dystrophy	Congenital Muscular Dystrophy (CMD)
C19939	Biopsy and autopsy fiber abnormality status	Presence or absence of fiber abnormalities on a muscle biopsy	Supplemental	Muscle Biopsies and Autopsy Tissue	False	Congenital Muscular Dystrophy	Congenital Muscular Dystrophy (CMD)
C19851	Medical history ventilator adjusted setting text	Text specifying any adjustments made to ventilator settings	Supplemental	Interval Medical History	False	Congenital Muscular Dystrophy	Congenital Muscular Dystrophy (CMD)
C18611	Imaging field of view axis 2 measurement	Axis 2 of the image that is visible through the camera at a particular position in orientation and space in millimeters	Supplemental	Brain Magnetic Resonance Imaging (MRI)	False	Congenital Muscular Dystrophy	Congenital Muscular Dystrophy (CMD)
C19987	Immunohistochemistry CD68 presence status	The status of the presence of CD68 in immunohistochemistry	Supplemental	Muscle Biopsies and Autopsy Tissue	False	Congenital Muscular Dystrophy	Congenital Muscular Dystrophy (CMD)
C19947	Biopsy and autopsy muscle spindle status	The status of the presence of muscle spindles	Supplemental	Muscle Biopsies and Autopsy Tissue	False	Congenital Muscular Dystrophy	Congenital Muscular Dystrophy (CMD)
C19859	Medical history joint dislocation since last visit indicator	Indicator of joint dislocations since last study visit	Supplemental	Interval Medical History	False	Congenital Muscular Dystrophy	Congenital Muscular Dystrophy (CMD)
C19955	Immunohistochemistry dystrophin status	The status of dystrophin (BMD hotspot) in immunohistochemistry	Supplemental	Muscle Biopsies and Autopsy Tissue	False	Congenital Muscular Dystrophy	Congenital Muscular Dystrophy (CMD)
C19867	Medical history speech therapy since last visit frequency	Frequency of change in speech therapy since last visit	Supplemental	Interval Medical History	False	Congenital Muscular Dystrophy	Congenital Muscular Dystrophy (CMD)
C18677	Employment other text	The free-text field related to 'Employment status' specifying other text. Status of participant/subject's current employment	Supplemental	Social Status	False	Congenital Muscular Dystrophy	Congenital Muscular Dystrophy (CMD)
C19682	Imaging ultrasound muscle level of involvement status	The level of involvement status for the muscle tested on the ultrasound	Supplemental	Muscle Imaging	False	Congenital Muscular Dystrophy	Congenital Muscular Dystrophy (CMD)
C19915	Biopsy and autopsy non rimmed vacuoles estimated percentage value	Non-rimmed vacuoles estimated percentage value	Supplemental	Muscle Biopsies and Autopsy Tissue	False	Congenital Muscular Dystrophy	Congenital Muscular Dystrophy (CMD)
C19828	Learning disability mental retardation indicator	Indicator of mental retardation	Supplemental	Intake Medical History	False	Congenital Muscular Dystrophy	Congenital Muscular Dystrophy (CMD)
C19963	Immunohistochemistry beta dystroglycan status	The status of Beta dystroglycan in immunohistochemistry	Supplemental	Muscle Biopsies and Autopsy Tissue	False	Congenital Muscular Dystrophy	Congenital Muscular Dystrophy (CMD)
C19875	Medical history seizures since last visit indicator	Indicator of seizures since last visit	Supplemental	Interval Medical History	False	Congenital Muscular Dystrophy	Congenital Muscular Dystrophy (CMD)
C19923	Biopsy and autopsy minicores estimated percentage value	Minicores estimated percent count	Supplemental	Muscle Biopsies and Autopsy Tissue	False	Congenital Muscular Dystrophy	Congenital Muscular Dystrophy (CMD)
C19836	Pain anatomic site text	Anatomic Site of body pain	Supplemental	Intake Medical History	False	Congenital Muscular Dystrophy	Congenital Muscular Dystrophy (CMD)
C19971	Immunohistochemistry caveolin 3 status	The status of caveolin 3 in immunohistochemistry	Supplemental	Muscle Biopsies and Autopsy Tissue	False	Congenital Muscular Dystrophy	Congenital Muscular Dystrophy (CMD)
C19883	Motor function history type	Type of motor function	Supplemental	Interval Medical History	False	Congenital Muscular Dystrophy	Congenital Muscular Dystrophy (CMD)
C58650	Tissue specimen section thickness not known indicator	Indicator that the tissue specimen thickness is not known	Supplemental-Highly Recommended	Skin Biopsies for Qualification of Intraepidermal Nerve Fibers	False	Congenital Muscular Dystrophy	Congenital Muscular Dystrophy (CMD)
C19893	Symptom presentation cardiac disease text	Known cardiac disease participant/ subject shows at presentation	Supplemental	Muscle Biopsies and Autopsy Tissue	False	Congenital Muscular Dystrophy	Congenital Muscular Dystrophy (CMD)
C19805	Medical history endocrine osteoporosis indicator	Indicator of history of osteoporosis	Supplemental	Intake Medical History	False	Congenital Muscular Dystrophy	Congenital Muscular Dystrophy (CMD)

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The NINDS CDE Team does not post proprietary instruments/scales recommended by the CDE Working Groups on this website. This includes, but is not limited to, copyrighted or trademarked instruments/scales. Information about recommended instruments can be found in the Notice of Copyright (NOC) documents under ‘CRF Module/Guideline’ on each disorder’s data standards page. For any questions regarding these instruments/scales please contact the corresponding owner/author. The NINDS CDE Team is not responsible for the availability or content of these external sites, nor does the NINDS CDE Team endorse, warrant or guarantee the products, services or information described or offered at these other internet sites.