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.

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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
C11980	Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) - cutting food and handling utensils without gastronomy score	Cutting food and handling utensils score for patients without gastrostomy on the Amyotrophic Lateral Sclerosis Functional Rating Scale - Revised (ALSFRS-R)	Core	ALS Functional Rating Scale - Revised (ALSFRS-R)	True	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C01507	Blood pressure diastolic measurement	Measurement of pressure of the participant's/subject's blood against the artery walls during diastole (the relaxation phase) in millimeters of mercury (mmHg)	Core	Vital Signs	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C19515	Gene screened type	Type of genes screened for mutations in patient	Core	Genetics	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C11988	Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) - respiratory insufficiency score	Respiratory insufficiency score on the Amyotrophic Lateral Sclerosis Functional Rating Scale - Revised (ALSFRS-R)	Core	ALS Functional Rating Scale - Revised (ALSFRS-R)	True	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C01015	Physical exam performed indicator	Indicator of whether a physical exam was performed on the participant/subject	Core	Physical Examination	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C58677	Gender identity type	Gender identity self-identified by the subject/participant. Gender type may or may not match sex assigned at birth	Core	General Core	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C10972	Manual muscle testing position type	The position of the participant/subject when performing the Manual Muscle Testing (MMT) assessment	Core	Manual Muscle Testing-Using the Medical Research Council Muscle Grading Scale	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C00020	Ethnicity USA category	Category of ethnicity the participant/subject most closely identifies with	Core	Demographics	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C00015	Education year count	Number of years of education completed (age 5 and beyond)	Core	Social Status	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C11965	Tardieu Scale movement resistance score	The semi-quantitative score describing relative resistance to passive limb movement or occurrence of spasticity observed while administering the Tardieu Scale assessment to measure the reaction of muscles of a tested limb in a participant/subject	Core	Tardieu Scale	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C12029	Written Verbal Fluency Test (WVFT) - index value	Value of the Written Verbal Fluency Index, calculated by subtracting the time taken to copy the words from 9 minutes, then dividing the resulting time by the number of legitimate words	Core	Written Verbal Fluency Test	True	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C10172	Forced vital capacity result value	Value representing the Forced Vital Capacity (FVC), in Liters, as the maximum volume of air that can be exhaled as rapidly, forcefully, and completely as possible from the point of maximal inhalation	Core	Pulmonary Function	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C11981	Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) - cutting food and handling utensils with gastronomy score	Cutting food and handling utensils score for patients with gastrostomy on the Amyotrophic Lateral Sclerosis Functional Rating Scale - Revised (ALSFRS-R)	Core	ALS Functional Rating Scale - Revised (ALSFRS-R)	True	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C00321	Medical history for body system indicator	Indicator of whether the participant/subject has a history of medical problems/conditions for the specific body system	Core	Medical History	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C01519	Vital signs date and time	Date (and time, if applicable and known) the vital signs and other body measurements were taken by indicating the month, day, and year for the date and am, pm, or 24 hour clock for time	Core	Vital Signs	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C00007	Birth date	Date (and time, if applicable and known) the participant/subject was born	Core	General Core	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C11989	Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) - total score	Total score on the Amyotrophic Lateral Sclerosis Functional Rating Scale - Revised (ALSFRS-R)	Core	ALS Functional Rating Scale - Revised (ALSFRS-R)	True	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C01565	Blood pressure systolic measurement	Measurement of pressure of the participant's/subject's blood against the artery walls during systole (the contraction phase) in millimeters of mercury (mmHg)	Core	Vital Signs	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C10974	Manual muscle testing muscle score	The score the participant/subject achieved on the Manual Muscle Testing (MMT) for the particular muscle	Core	Manual Muscle Testing-Using the Medical Research Council Muscle Grading Scale	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C00031	Race expanded category	Category of race(s) or region(s) the participant/subject most closely identifies with	Core	Demographics	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C11966	Tardieu Scale muscle reaction angle measurement	The degree of angle for limb position at which muscle reaction or spasticity occurs for a given velocity administered during the Tardieu Scale assessment to measure the reaction of muscles of a tested limb in a participant/subject	Core	Tardieu Scale	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C11982	Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) - dressing hygiene score	Dressing and hygiene score on the Amyotrophic Lateral Sclerosis Functional Rating Scale - Revised (ALSFRS-R)	Core	ALS Functional Rating Scale - Revised (ALSFRS-R)	True	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C00322	Medical history condition text	Verbatim text for the medical condition/disease reported by the participant/subject or documented in the medical record as part of medical history	Core	Medical History	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C19517	Positive gene type	Type of gene found to be positive after screening	Core	Genetics	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C12024	Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) - performed date	Date Amyotrophic Lateral Sclerosis Functional Rating Scale - Revised (ALSFRS-R) was performed	Core	ALS Functional Rating Scale - Revised (ALSFRS-R)	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.