CDE Catalog | NINDS Common Data Elements

***Please contact the NINDS CDE Team (NINDSCDE@emmes.com) if 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 (SRC) or Traumatic Brain Injury (TBI) as the Disease, please select a Subdisease as well.

NeuroRehab Comprehensive includes all NeuroRehab CDE recommendations. NeuroRehab General includes all NeuroRehab CDE recommendations that are not disease specific. All other NeuroRehab Subdiseases include recommendations specific to existing NINDS CDE project disorders.

Choose your Time Frame for your SRC study (Acute (time of injury until 72 hours), Subacute (after 72 hours to 3 months), and Persistent/Chronic (3 months and greater post-concussion) or Comprehensive if your study falls across the study time frames.

Choose your type of TBI study (Acute Hospitalized, Concussion/Mild TBI, Moderate/Severe TBI: Rehabilitation, or Epidemiology) or Comprehensive if your study falls outside of the study types or incorporates aspects of more than one type of study.

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CRF Name

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Operations

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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.
Select all	CDE ID	CDE Name	Definition	Classification	CRF Name	Copyrighted or trademarked	Disease Name	Subdisease Name
F1807-C00322	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	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1836-C00322	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	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1807-C58676	C58676	Birth sex assigned type	Self-reported phenotypic sex of participant/subject, assigned at birth	Core	General Core	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1823-C00030	C00030	Race USA category	The patient's self declared racial origination, independent of ethnic origination, using OMB approved categories	Core	Demographics	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1807-C58677	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	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1833-C00015	C00015	Education year count	Number of years of education completed (age 5 and beyond)	Core	Social Status	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1807-C00007	C00007	Birth date	Date (and time, if applicable and known) the participant/subject was born	Core	General Core	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1988-C12226	C12226	Specimen source type	Type of specimen collection source	Core	Muscle Biopsy and Autopsy Tissue	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1823-C00035	C00035	Gender type	Self-reported gender of the participant/subject	Core	Demographics	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1807-C00020	C00020	Ethnicity USA category	Category of ethnicity the participant/subject most closely identifies with	Core	General Core	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1823-C00007	C00007	Birth date	Date (and time, if applicable and known) the participant/subject was born	Core	Demographics	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1807-C00030	C00030	Race USA category	The patient's self declared racial origination, independent of ethnic origination, using OMB approved categories	Core	General Core	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1988-C12229	C12229	Tissue specimen size measurement	Measurement of the size of the tissue specimen collected	Core	Muscle Biopsy and Autopsy Tissue	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1823-C00020	C00020	Ethnicity USA category	Category of ethnicity the participant/subject most closely identifies with	Core	Demographics	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1988-C18828	C18828	Histochemical stains used other text	The free-text field related to 'Histochemical stains used type' specifying other text. Type of standard histochemical stains used on the tissue specimen	Core	Muscle Biopsy and Autopsy Tissue	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1807-C00313	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	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1988-C12230	C12230	Tissue specimen collection date and time	Date (and time if applicable and known) when the tissue specimen was collected	Core	Muscle Biopsy and Autopsy Tissue	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1988-C12525	C12525	Biopsy and autopsy fiber abnormality type	Fiber type abnormalities on a muscle biopsy	Core	Muscle Biopsy and Autopsy Tissue	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1874-C19706	C19706	Non-Dystrophic Myotonia Interactive Voice Response (IVR) Diary - Pain prior day assessment indicator	Indicator of pain felt within the last 24 hours	Exploratory	Non-Dystrophic Myotonia Interactive Voice Response (IVR) Diary	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1874-C19707	C19707	Non-Dystrophic Myotonia Interactive Voice Response (IVR) Diary - Pain prior day assessment scale	Scale of amount of pain within the last 24 hours	Exploratory	Non-Dystrophic Myotonia Interactive Voice Response (IVR) Diary	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1874-C19708	C19708	Non-Dystrophic Myotonia Interactive Voice Response (IVR) Diary - Weakness prior day assessment indicator	Indicator of weakness felt within the last 24 hours	Exploratory	Non-Dystrophic Myotonia Interactive Voice Response (IVR) Diary	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1874-C19709	C19709	Non-Dystrophic Myotonia Interactive Voice Response (IVR) Diary - Weakness prior day assessment scale	Scale of amount of weakness within the last 24 hours	Exploratory	Non-Dystrophic Myotonia Interactive Voice Response (IVR) Diary	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1874-C19710	C19710	Non-Dystrophic Myotonia Interactive Voice Response (IVR) Diary - Fatique prior day assessment indicator	Indicator of tiredness or fatigue within the last 24 hours	Exploratory	Non-Dystrophic Myotonia Interactive Voice Response (IVR) Diary	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1874-C19711	C19711	Non-Dystrophic Myotonia Interactive Voice Response (IVR) Diary - Fatique prior day assessment scale	Scale of amount of tiredness or fatigue within the last 24 hours	Exploratory	Non-Dystrophic Myotonia Interactive Voice Response (IVR) Diary	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
F1874-C19704	C19704	Non-Dystrophic Myotonia Interactive Voice Response (IVR) Diary - Stiffness prior day assessment indicator	Indicator of stiffness felt within the last 24 hours	Exploratory	Non-Dystrophic Myotonia Interactive Voice Response (IVR) Diary	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy

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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.