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
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
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
C12026	Written Verbal Fluency Test (WVFT) - write four letter C word four minute count	Count of legitimate words exactly 4 letters long and beginning with the letter C that the participant/subject was able to write in 4 minutes	Core	Written Verbal Fluency Test	True	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C11978	Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) - handwriting score	Handwriting 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
C11986	Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) - dyspnea score	Dyspnea 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
C01541	Weight measurement	Measurement of participant's/subject's weight	Core	Vital Signs	False	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	General Core	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C10970	Manual muscle testing date and time	Date (and time, if applicable and known) the Manual Muscle Testing (MMT) was performed	Core	Manual Muscle Testing-Using the Medical Research Council Muscle Grading Scale	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C00035	Gender type	Self-reported gender of the participant/subject	Core	Demographics	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C00312	Body system category	Category or grouping used in the comprehensive assessment of a participant/subject, which includes a subjective history taking component as well as an objective based structured interview and physical examination of all the body systems	Core	Medical History	False	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
C12027	Written Verbal Fluency Test (WVFT) - copy previous word rapid text	Text of previously generated words copied by the participant/subject as fast as possible as part of Written Verbal Fluency Test	Core	Written Verbal Fluency Test	True	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C18666	Body system other text	The free-text field related to 'Body system category' specifying other text. Category or grouping used in the comprehensive assessment of a participant/subject, which includes a subjective history taking component as well as an objective based structured	Core	Physical Examination	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C10813	Adopted indicator	Whether the subject/participant was adopted	Core	Family History	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C10971	Manual muscle testing visit type	The type of visit at which the manual muscle testing was performed	Core	Manual Muscle Testing-Using the Medical Research Council Muscle Grading Scale	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C11979	Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) - gastrostomy status	Whether the participant/subject has a gastrostomy tube 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
C11987	Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) - orthopnea score	Orthopnea 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
C58676	Birth sex assigned type	Self-reported phenotypic sex of participant/subject, assigned at birth	Core	General Core	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C11104	Pulmonary function slow vital capacity (sVC) result value	Value, in Liters, representing the slow Vital Capacity (SVC) maximal amount of air exhaled steadily from full inspiration to maximal expiration in liters. Not time-dependent	Core	Pulmonary Function	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C00313	Medical history condition SNOMED CT code	Systematized Nomenclature Of Medicine Clinical Terms (SNOMED CT) code for medical condition/disease reported by the participant/subject	Core	Medical History	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C11964	Tardieu Scale relative velocity rate	The relative velocity (for a repeated measure) during administration of the Tardieu Scale assessment to measure muscle reaction through evaluation of spasticity and resistance to passive limb movement in a participant/subject	Core	Tardieu Scale	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C12028	Written Verbal Fluency Test (WVFT) - copy word fast possible duration	Duration required by the participant/subject to copy the legitimate words from both the intial-S list and the 4-letter initial-C list as fast as possible	Core	Written Verbal Fluency Test	True	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
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

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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.