CDE Catalog | NINDS Common Data Elements

***Please contact the NINDS CDE Team (NINDSCDE@emmes.com) if 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.

Search Form

CRF Name

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Operations

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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.
Select all	CDE ID	CDE Name	Definition	Classification	CRF Name	Copyrighted or trademarked	Disease Name	Subdisease Name
F1988-C12519	C12519	Myofiber degeneration severity status	Severity of the Myofiber degeneration muscle diagnostic abnormalities	Supplemental	Muscle Biopsy and Autopsy Tissue	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1037-C12337	C12337	Respiratory postural drainage session time	Time it takes per session for the participant/subject to use postural drainage therapy	Supplemental	Respiratory Interventions	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1835-C19667	C19667	Family history diagnosis type	Type of diagnosis method for relative	Supplemental	Family History	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1060-C12904	C12904	Echocardiogram left ventricular mass measurement	Measurement of the left ventricular mass, calculated as the difference between the epicardium delimited volume and the left ventricular chamber volume multiplied by an estimate of the myocardial density obtained by echocardiography	Supplemental	Echocardiogram	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1988-C12234	C12234	Preservation technique used amount value	Value of the amount of preservation solution or material used to preserve the specimen	Supplemental	Muscle Biopsy and Autopsy Tissue	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1823-C00033	C00033	Race USA maternal category	Race(s) the participant/subject's mother most closely identifies with	Supplemental	Demographics	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1038-C12421	C12421	Pulmonary gas exchange lowest oxygen saturation value	The lowest recorded oxygen saturation (SpO2) value	Supplemental	Measures of Gas Exchange	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1060-C10740	C10740	Echocardiogram left ventricle ejection fraction measurement	Measurement of the fraction of blood pumped out of the left ventricles with each heart beat obtained by echocardiography	Supplemental	Echocardiogram	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1037-C12404	C12404	Respiratory oxygen use schedule daily hours value	Value of the number of hours of supplemental oxygen use per day	Supplemental	Respiratory Interventions	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1037-C12387	C12387	Respiratory support ventilation mode type	Type of mode of ventilation for the support ventilation device used	Supplemental	Respiratory Interventions	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1988-C12529	C12529	Biopsy and autopsy ragged red fibers estimated count	Ragged red fibers estimated number	Supplemental	Muscle Biopsy and Autopsy Tissue	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1037-C12345	C12345	Respiratory lung volume recruitment cycle number count	Count of the number of cycles completed per session of lung volume recruitment device use	Supplemental	Respiratory Interventions	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1836-C00314	C00314	Medical history taken date and time	Date (and time, if applicable and known) the participant's medical history was taken	Supplemental	Medical History	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1060-C12912	C12912	Echocardiogram pericardial effusion abnormal indicator	Indicator of whether there is pericardial effusion or abnormality observed by echocardiogram	Supplemental	Echocardiogram	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1988-C12245	C12245	Symptom presentation type	Symptoms participant/ subject shows at presentation	Supplemental	Muscle Biopsy and Autopsy Tissue	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1829-C10970	C10970	Manual muscle testing date and time	Date (and time, if applicable and known) the Manual Muscle Testing (MMT) was performed	Supplemental	Manual Muscle Testing-Using the Medical Research Council Muscle Grading Scale	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1055-C02498	C02498	Imaging scanner software version number text	Free-text field specifying the version number of the imaging scanner software	Supplemental	Magnetic Resonance Imaging (MRI)	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1060-C10772	C10772	Echocardiogram left atrial antero - posterior dimension z-score	Z-score calculated for the left atrial antero - posterior dimension measured with echocardiography	Supplemental	Echocardiogram	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1037-C18839	C18839	Respiratory postural drainage use other text	The free-text field related to 'Respiratory postural drainage use frequency' specifying other text. Frequency of postural drainage use	Supplemental	Respiratory Interventions	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1988-C17903	C17903	Biopsy and autopsy abnormalities on immunohistochemistry text	Text regarding abnormalities on immunohistochemistry	Supplemental	Muscle Biopsy and Autopsy Tissue	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1037-C12353	C12353	Respiratory intrapulmonary percussive ventilation or MetaNeb type	Type of intrapulmonary percussive ventilation or MetaNeb device used	Supplemental	Respiratory Interventions	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1836-C18793	C18793	Medical history condition other text	The free-text field related to 'Medical history condition type', specifying other text. Pre-specified medical condition/disease asked about when collecting the medical history from the participant or found documented in the medical record	Supplemental	Medical History	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1060-C18877	C18877	Echocardiogram right ventricle systolic pressure estimation type other text	The free-text field related to 'Echocardiogram systolic pressure estimation type' specifying other text. Type of technique used to estimate the right ventricular systolic pressure	Supplemental	Echocardiogram	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1988-C12255	C12255	Biopsy and autopsy central nuclei estimated fibers percent value	Estimated percent of fibers in central nuclei	Supplemental	Muscle Biopsy and Autopsy Tissue	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1020-C10867	C10867	Dynamometry hand held muscle test performed anatomic site	The type of muscle tested using hand held dynamometry	Supplemental	Hand Held Dynamometry	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy

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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.