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
C11984	Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) - walking score	Walking 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
C11098	Pulmonary function test date and time	Date the pulmonary function test was performed	Core	Pulmonary Function	False	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
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	Myocardial Oxygen Consumption, Gas Exchange and Nocturnal Oximetry	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C11976	Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) - salivation score	Salivation 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
C00030	Race USA category	The patient's self declared racial origination, independent of ethnic origination, using OMB approved categories.	Core	General Core	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C05404	Symptom onset date and time	Date (and time, if applicable and known) reported for onset of participant's/subject's symptoms	Core	Symptom, Sign, Diagnosis Criteria	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C01010	Physical exam date and time	Date (and time if applicable and known) physical exam was performed	Core	Physical Examination	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C00721	Family history medical condition indicator	Indicator of whether a family member or first and second degree blood relatives of the participant/subject has had a history of the particular medical condition or health related event	Core	Family History	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C11985	Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) - climbing stairs score	Climbing stairs 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
C12025	Written Verbal Fluency Test (WVFT) - write letter S word five minute count	Count of legitimate words beginning with the letter S written by the participant/subject in 5 minutes	Core	Written Verbal Fluency Test	True	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C11099	Pulmonary function test type	Type of pulmonary function testing performed	Core	Pulmonary Function	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C11977	Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) - swallowing score	Swallowing 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
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	General Core	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C08007	Diagnosis first given date and time	Date (and time if applicable and known) the participant/subject was initially diagnosed with the disease or disorder	Core	Symptom, Sign, Diagnosis Criteria	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C02411	Laterality type	Laterality type relative to the anatomic site of the body examined or affected	Core	Manual Muscle Testing-Using the Medical Research Council Muscle Grading Scale	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C01012	Physical exam body system result type	Assessment result of each body system examined	Core	Physical Examination	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C00722	Family history medical condition relative type	Relationship of the family member or ancestor with the medical condition or health related event to the participant/subject	Core	Family History	False	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
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
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
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
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
C11119	Body part first affected text	Identification of the body part(s) first affected by the disease.	Core	Symptom, Sign, Diagnosis Criteria	False	Amyotrophic Lateral Sclerosis	Amyotrophic Lateral Sclerosis
C00007	Birth date	Date (and time, if applicable and known) the participant/subject was born	Core	Demographics	False	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.