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 or Traumatic Brain Injury as the Disease, please select a Sub-Disease as well.

NeuroRehab Comprehensive includes all CDE recommendations.

NeuroRehab General includes all CDE recommendations that are not disease specific.

All other NeuroRehab Sub-Diseases include recommendations specific to existing NINDS CDE project disorders.

Search Form

Sub Domain Name

CRF Name

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Operations

Selected 25 rows in this page.

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	Sub Disease Name
C00015	Education year count	Number of years of education completed (age 5 and beyond)	Supplemental-Highly Recommended	General Core	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C10932	Imaging lesion found indicator	Indicator of whether lesions are found within the imaging study	Supplemental	Magnetic Resonance Imaging (MRI)	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C21094	Frontal Systems Behavior Scale (FrSBE) - Missing answer subscale A count	Count of unanswered or missing questions for Apathy subscale as part of Frontal Systems Behavior Scale (FrSBE) form	Supplemental	Frontal Systems Behavioral Scale (FrSBe)	True	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C17863	Timed 25-Foot Walk (T25FW) - trial not complete reason text	Text description of the indicated reason why the trial being recorded was not completed, as part of the Frontal Behavioral Inventory-ALS Version (FBI-ALS)	Supplemental	Timed 25-Foot Walk (T25-FW)	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C21005	Frontal Systems Behavior Scale (FrSBE) - Lack emotion concern frequency scale	Frequency of showing little emotion, is unconcerned and unresponsive as part of Frontal Systems Behavior Scale (FrSBE) - Apathy subscale	Supplemental	Frontal Systems Behavioral Scale (FrSBe)	True	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C10599	Parameter map calculation type	Type(s) of parameter maps calculated for the perfusion MRI scan being reported	Supplemental	Brain Perfusion Magnetic Resonance Imaging	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C11675	Emotional Lability Questionnaire (ELQ) - laughter sudden episode other emotion text	Text specification of other emotions felt by the participant either immediately before or simultaneously with sudden episodes of laughter in the past four weeks , as part of the Emotional Lability Questionnaire (ELQ)	Supplemental	Emotional Lability Questionnaire: Person with MND (ELQ-MND)	True	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C17541	Tardieu Scale assistive device text	Text identifying an assistive device used by the participant/subject for an immovable joint in a limb	Supplemental	Tardieu Scale	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C10836	Imaging functional task type	The functional status of the participant/subject when tasks are of a certain type	Supplemental	Functional Magnetic Resonance Imaging (fMRI)	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C09336	Geriatric Depression Scale (GDS) - empty life indicator	Indicator whether respondent has felt his or her life is empty over the past week, as part of the Geriatric Depression Scale (short form) (GDSSF)	Supplemental	Geriatric Depression Scale (GDS)	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C18714	Imaging radio frequency coil channel count other text	The free-text field related to 'Imaging radio frequency coil channel count', specifying other text. Number of the coil channels in the radio frequency (RF) coil used for the imaging scan	Supplemental	Magnetic Resonance Spectroscopy	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C11548	Cambridge Behavioural Inventory Revised (CBI-R) - sad depressed frequency score	Score for frequency over past month of appearing sad or depressed as part of the Cambridge Behavioural Inventory Revised (CBI-R)	Supplemental	Cambridge Behavioral Inventory - Revised	True	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C18690	Imaging analysis software other text	The free-text field related to 'Imaging analysis software name' specifying other text. Name of the software used for data processing or analysis of the imaging study	Supplemental	Magnetic Resonance Imaging (MRI)	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C11971	ALS Severity Score (ALSSS) - bulbar score value	Value of the sum of the speech subscore and swallowing subscore, as part of the ALS Severity Score of Hillel et al. (ALSSS)	Supplemental	ALS Swallowing Severity Scale (ALSSS)	True	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C20527	European Quality of Life Five Dimension Five Level Scale (EQ-5D-5L) - Self-care category	Category determining the extent to which the participant has problems with self-care, as part of the European Quality of Life Five Dimension Five Level Scale (EQ-5D-5L)	Supplemental	EuroQoL-5 Dimension Questionnaire (EQ-5D)	True	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C10276	Quality of Life in Swallowing Disorders (SWAL-QOL) - swallowing problem distraction indicator	Scale assessing how true the following statement has been for the participant during the last month: My swallowing problem is a major distraction in my life, as part of Quality of Life in Swallowing Disorders (SWAL-QOL)	Supplemental	Quality of Life in Swallowing Disorders (SWAL-QOL)	True	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C21020	Frontal Systems Behavior Scale (FrSBE) - Food lack smell taste complaint frequency scale	Frequency of complaining that food has no taste or smell as part of Frontal Systems Behavior Scale (FrSBE) - Disinhibition subscale	Supplemental	Frontal Systems Behavioral Scale (FrSBe)	True	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C11683	Emotional Lability Questionnaire (ELQ) - cry sudden episode sad proportion score	Score for the proportion of any sudden episodes of crying experienced by the participant/subject in the past four weeks that occurred as a result of sadness, as part of the Emotional Lability Questionnaire (ELQ)	Supplemental	Emotional Lability Questionnaire: Person with MND (ELQ-MND)	True	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C21900	Geriatric Depression Scale (GDS) Long Form - Future hopeful indicator	Indicator whether the subject is hopeful about the future (long form) (GDSLF)	Supplemental	Geriatric Depression Scale (GDS)	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C11556	Cambridge Behavioural Inventory Revised (CBI-R) - increased appetite frequency score	Score for frequency over past month of her/him having greater appetite and eating more than before as part of the Cambridge Behavioural Inventory Revised (CBI-R)	Supplemental	Cambridge Behavioral Inventory - Revised	True	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C18719	Imaging slice orientation type other text	The free-text field related to 'Imaging slice orientation type', specifying other text. The slice orientation used in imaging acquisition	Supplemental	Magnetic Resonance Imaging (MRI)	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C11603	Center for Neurologic Study Bulbar Function Scale (CNS-BFS) - mouth dab stop drool frequency score	Score for the frequency that the participant's mouth needed to be dabbed to prevent drooling in the past week, as part of the Center for Neurologic Study Bulbar Function Scale (CNS-BFS)	Supplemental	Center for Neurologic Study - Bulbar Function Scale (CNS-BFS)	True	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C10577	Imaging signal averages number	Number of signal acquisitions averaged in imaging acquisition	Supplemental	Magnetic Resonance Spectroscopy	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C54448	Functional Gait Assessment (FGA) - Gait speed change task score	Score for the change in gait speed task, as part of the Functional Gait Assessment (FGA)	Supplemental	Dynamic Gait Index (DGI)	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C10284	Quality of Life in Swallowing Disorders (SWAL-QOL) - choking liquid problem indicator	Scale assessing how true the following statement has been for the participant during the last month: Choking when you take liquids. As part of Quality of Life in Swallowing Disorders (SWAL-QOL)	Supplemental	Quality of Life in Swallowing Disorders (SWAL-QOL)	True	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis

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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.