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 (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.

Search Form

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	Subdisease Name
C15044	Brain atrophy thalamus neuronal loss severity result	Quantitative result of the severity of neuronal loss in the thalamus	Supplemental	Neuropathology Data Form	False	Huntington's Disease	Huntington's Disease
C20382	Pittsburgh Sleep Quality Index (PSQI) - Sleep disturbance scale	The scale to which sleep disturbance was calculated, as part of the Pittsburgh Sleep Quality Index (PSQI)	Supplemental	Pittsburgh Sleep Quality Index (PSQI)	False	Huntington's Disease	Huntington's Disease
C14976	Brain atrophy surface severity result	Quantitative result of the severity of cerebral atrophy on external brain surface	Supplemental	Neuropathology Data Form	False	Huntington's Disease	Huntington's Disease
C08233	Drug or substance first illicit use date and time	Date (and time if applicable and known) the participant/subject first used the category of illegal drugs, prescription or over-the-counter drugs	Supplemental	Non-prescribed Drug Use Questionnaire	False	Huntington's Disease	Huntington's Disease
C17682	Family history collection source informant specify type	The type of informant the family history data was collected from	Supplemental	Family History	False	Huntington's Disease	Huntington's Disease
C14984	Brain atrophy coronal sections amygdala severity result	Quantitative result of the severity of amygdala atrophy in the coronal sections of the brain	Supplemental	Neuropathology Data Form	False	Huntington's Disease	Huntington's Disease
C18995	Brain atrophy thalamus neuronal loss nuclei other text	The free-text field related to 'Brain atrophy thalamus neuronal loss nuclei name' specifying other text. Name of the nuclei in the thalamus involved in the neuronal loss	Supplemental	Neuropathology Data Form	False	Huntington's Disease	Huntington's Disease
C08149	Diagnosis final clinical death type	Physician's final clinical diagnosis for the participant/subject	Supplemental	Neuropathology Data Form	False	Huntington's Disease	Huntington's Disease
C17688	Non-prescribed controlled psychoactive drug substance opioid text	The text specifying the drugs within the 'Opioids/Narcotics: heroin, opium, morphine, methadone, codeine, Darvon, Percodan, Oxycontin, Dilaudid, Demerol/meperidine,' category as unprescribed, controlled psychoactive drugs or substances used by the participant/subject	Supplemental	Non-prescribed Drug Use Questionnaire	False	Huntington's Disease	Huntington's Disease
C08080	Twin sibling indicator	Indicator of whether the participant/subject has a twin brother or sister	Supplemental	History of Early Exposure to Huntington's disease	False	Huntington's Disease	Huntington's Disease
C58781	Gender identity type other text	The free-text field related to 'Gender identity type', specifying other text	Supplemental	General Core	False	Huntington's Disease	Huntington's Disease
C14992	Brain atrophy striatum status cribrosus or lacunaris severity result	Quantitative result of the severity of atrophy located in the status cribrosus or lacunaris, or both	Supplemental	Neuropathology Data Form	False	Huntington's Disease	Huntington's Disease
C20358	Pittsburgh Sleep Quality Index (PSQI) - Awaken bathroom use past month scale	The scale to which the subject had to get up to use the bathroom during the past month, as part of the Pittsburgh Sleep Quality Index (PSQI)	Supplemental	Pittsburgh Sleep Quality Index (PSQI)	False	Huntington's Disease	Huntington's Disease
C08158	Brain weight measurement	Weight of the participant's/subject's brain in grams	Supplemental	Neuropathology Data Form	False	Huntington's Disease	Huntington's Disease
C14952	Huntingtons Disease motor symptom first appeared self report type	The type of first motor symptoms described by the participant/subject	Supplemental	Medical History of Huntington's Disease	False	Huntington's Disease	Huntington's Disease
C15107	Huntingtons Disease diagnosis grade	The grade of severity of HD or amyloid angiopathy severity	Supplemental	Neuropathology Data Form	False	Huntington's Disease	Huntington's Disease
C10570	Imaging contrast agent used indicator	Indicator as to whether or not an imaging contrast agent was used for the scan	Supplemental	Magnetic Resonance (MR) Localization Imaging	False	Huntington's Disease	Huntington's Disease
C15067	Brain atrophy pontine nuclei globosum neuronal tangles status	Status of globosum neuronal tangles (GNT) in the pontine nuclei	Supplemental	Neuropathology Data Form	False	Huntington's Disease	Huntington's Disease
C17739	Informant participant family member relationship text	The free-text field to specify the relationship of the informant to a family member of the participant/subject	Supplemental	Medical History of Huntington's Disease	False	Huntington's Disease	Huntington's Disease
C17753	Macroscopic examination brain text	Note regarding macroscopic examination of fresh or fixed brain parts	Supplemental	Neuropathology Data Form	False	Huntington's Disease	Huntington's Disease
C14964	Sedation used indicator	Whether the participant/subject was administered any sedation	Supplemental	Magnetic Resonance (MR) Localization Imaging	False	Huntington's Disease	Huntington's Disease
C15075	Brain atrophy cerebellum cortical neuronal loss in receptive layer indicator	Indicator of cortical neuronal loss in the receptive layer (granular) of the cerebellum	Supplemental	Neuropathology Data Form	False	Huntington's Disease	Huntington's Disease
C19059	Informant participant relationship other text	The free-text field related to 'Informant participant relationship type' specifying other text. The relationship of the informant to participant/subject	Supplemental	Medical History of Huntington's Disease	False	Huntington's Disease	Huntington's Disease
C17761	Striatum atrophy subthalamic nucleus atrophy status	Status of atrophy in the subthalamic nucleus	Supplemental	Neuropathology Data Form	False	Huntington's Disease	Huntington's Disease
C18700	Imaging matrix size value other text	The free-text field related to 'Imaging matrix size value', specifying other text. Value representing the imaging matrix size in millimeters	Supplemental	Magnetic Resonance (MR) Localization Imaging	False	Huntington's Disease	Huntington's 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.