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
C06005	Data collected date and time	Date (and time, if applicable and known) the data were collected. This may be the date/time a particular examination or procedure was performed.	Core	Child and Adolescent Scale of Participation (CASP)	True	Mitochondrial Disease	Mitochondrial Disease
C00007	Birth date	Date (and time, if applicable and known) the participant/subject was born	Core	General Core	False	Mitochondrial Disease	Mitochondrial Disease
C00020	Ethnicity USA category	Category of ethnicity the participant/subject most closely identifies with	Core	General Core	False	Mitochondrial Disease	Mitochondrial Disease
C52022	Child and Adolescent Scale of Participation (CASP) - Child name	Name of subject/participant, as part of the Child and Adolescent Scale of Participation (CASP).	Core	Child and Adolescent Scale of Participation (CASP)	True	Mitochondrial Disease	Mitochondrial Disease
C00030	Race USA category	The patient's self declared racial origination, independent of ethnic origination, using OMB approved categories.	Core	General Core	False	Mitochondrial Disease	Mitochondrial Disease
C52023	Child and Adolescent Scale of Participation (CASP) - Relative name	Name of participant/subject's relative, or the person filling out the scale, as part of the Child and Adolescent Scale of Participation (CASP).	Core	Child and Adolescent Scale of Participation (CASP)	True	Mitochondrial Disease	Mitochondrial Disease
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	Mitochondrial Disease	Mitochondrial Disease
C52024	Child and Adolescent Scale of Participation (CASP) - Relationship text	Text describing your relationship to the participant/subject, as part of the Child and Adolescent Scale of Participation (CASP).	Core	Child and Adolescent Scale of Participation (CASP)	True	Mitochondrial Disease	Mitochondrial Disease
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	Mitochondrial Disease	Mitochondrial Disease
C58676	Birth sex assigned type	Self-reported phenotypic sex of participant/subject, assigned at birth.	Core	General Core	False	Mitochondrial Disease	Mitochondrial Disease
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	Mitochondrial Disease	Mitochondrial Disease
C20317	Imaging two dimensional speckle tracking echocardiography four chamber segmental strain assessment result	The result in four chamber view segmental strain as related to the two dimensional speckle tracking echocardiography	Exploratory	Two Dimensional Speckle Tracking Echocardiography Imaging	False	Mitochondrial Disease	Mitochondrial Disease
C10585	Imaging phase partial Fourier indicator	Indicator of whether phase partial Fourier was used	Exploratory	Brain Perfusion Magnetic Resonance Imaging	False	Mitochondrial Disease	Mitochondrial Disease
C10593	Imaging fat signal suppressed indicator	Indicator as to whether or not fat signal was suppressed in imaging acquisition	Exploratory	Brain Perfusion Magnetic Resonance Imaging	False	Mitochondrial Disease	Mitochondrial Disease
C20311	Imaging two dimensional speckle tracking echocardiography ventricle anatomic site	The anatomic site as related to ventricle in the two dimensional speckle tracking echocardiography	Exploratory	Two Dimensional Speckle Tracking Echocardiography Imaging	False	Mitochondrial Disease	Mitochondrial Disease
C20531	European Quality of Life Five Dimension Five Level Scale (EQ-5D-5L) - Pain discomfort category	Category determining the extent to which the participant has problems with pain or discomfort category, as part of the European Quality of Life Five Dimension Five Level Scale (EQ-5D-5L).	Exploratory	EuroQoL-5 Dimension Questionnaire (EQ-5D)	True	Mitochondrial Disease	Mitochondrial Disease
C20023	Imaging phosphorus magnetic resonance spectroscopy not leg assessment other text	The free-text field for other reason as related to not having scan of leg for phosphorus magnetic resonance spectroscopy (31PMRS).	Exploratory	Phosphorus Magnetic Resonance Spectroscopy (31PMRS)	False	Mitochondrial Disease	Mitochondrial Disease
C20318	Imaging two dimensional speckle tracking echocardiography two chamber segmental strain assessment anatomic site	The anatomic site in two chamber view segmental strain as related to the two dimensional speckle tracking echocardiography	Exploratory	Two Dimensional Speckle Tracking Echocardiography Imaging	False	Mitochondrial Disease	Mitochondrial Disease
C10586	Imaging bandwidth value	Value, in Hertz per pixel, of bandwidth used in imaging acquisition.	Exploratory	Brain Perfusion Magnetic Resonance Imaging	False	Mitochondrial Disease	Mitochondrial Disease
C10594	Imaging parallel acquisition used indicator	Indicator of whether a parallel acquisition method is used in imaging acquisition	Exploratory	Brain Perfusion Magnetic Resonance Imaging	False	Mitochondrial Disease	Mitochondrial Disease
C20312	Imaging two dimensional speckle tracking echocardiography ventricle circumferential strain assessment result	The result of circumferential strain as related to ventricle in the two dimensional speckle tracking echocardiography	Exploratory	Two Dimensional Speckle Tracking Echocardiography Imaging	False	Mitochondrial Disease	Mitochondrial Disease
C20533	European Quality of Life Five Dimension Five Level Scale (EQ-5D-5L) - Anxiety depression category	Category determining the extent to which the participant has problems with anxiety or depression category, as part of the European Quality of Life Five Dimension Five Level Scale (EQ-5D-5L).	Exploratory	EuroQoL-5 Dimension Questionnaire (EQ-5D)	True	Mitochondrial Disease	Mitochondrial Disease
C20024	Imaging phosphorus magnetic resonance spectroscopy thigh assessment status	The status as related to thigh scan of leg for phosphorus magnetic resonance spectroscopy (31PMRS).	Exploratory	Phosphorus Magnetic Resonance Spectroscopy (31PMRS)	False	Mitochondrial Disease	Mitochondrial Disease
C18703	Imaging parallel acquisition used other text	The free-text field related to 'Imaging parallel acquisition used type' specifying other text. Type of the parallel acquisition method used in imaging acquisition.	Exploratory	Brain Perfusion Magnetic Resonance Imaging	False	Mitochondrial Disease	Mitochondrial Disease
C20319	Imaging two dimensional speckle tracking echocardiography two chamber segmental strain assessment result	The result in two chamber view segmental strain as related to the two dimensional speckle tracking echocardiography	Exploratory	Two Dimensional Speckle Tracking Echocardiography Imaging	False	Mitochondrial Disease	Mitochondrial Disease

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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.