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.

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Sub Domain Name

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.
CDE ID	CDE Name	Definition	Classification	CRF Name	Copyrighted or trademarked	Disease Name	Sub Disease Name
C21118	Subject mailing address name	Name of the mailing address of subject/participant.	Supplemental	Participant/Subject Contact Information	False	General (For all diseases)	General (For all diseases)
C21200	Quality of Life - Read follow complex instruction difficulty scale	The scale which represents the amount of difficulty the participant currently has in reading and following complex instructions (e.g., directions for a new medication), as part of Neuro-QOL Cognitive Function.	Supplemental	Neuro-QOL Adult Bank - Cognitive Function	True	General (For all diseases)	General (For all diseases)
C56463	PROMIS - Pain Behavior when pain frown scale	Scale related to the individual feeling as if when he/she was in pain he/she frowned in the past 7 days, as part of the PROMIS Pain Behavior	Supplemental	PROMIS Item Bank v1.1 - Pain Behavior	False	General (For all diseases)	General (For all diseases)
C56076	PROMIS - Smoking nicotine dependence go too long cigarette strong urge scale	Scale related to an individual feeling if he/she went too long without a cigarette he/she gets strong urges that are hard to get rid of, as part of the PROMIS Smoking Nicotine Dependence	Supplemental	PROMIS Item Bank v1.0 - Smoking: Nicotine Dependence for All Smokers	False	General (For all diseases)	General (For all diseases)
C55737	PROMIS - Sleep Related Impairment still feel sleepy when awake scale	Scale related to an individual still feeling sleepy when he/she woke up, as part of the PROMIS Sleep Related Impairment	Supplemental	PROMIS Item Bank v1.0 - Sleep Related Impairment	True	General (For all diseases)	General (For all diseases)
C56389	PROMIS - Smoking social motivation smoke part self image scale	Scale related to an individual believing smoking is a part of his/her self-image, as part of the PROMIS Smoking Social Motivation	Supplemental	PROMIS Item Bank v1.0 - Smoking: Social Motivations for Daily Smokers	False	General (For all diseases)	General (For all diseases)
C55435	PROMIS - Anxiety indecisive scale	Scale related to an individual feeling indecisive, as part of the PROMIS Anxiety	Supplemental	PROMIS Item Bank v1.0 - Emotional Distress - Anxiety	True	General (For all diseases)	General (For all diseases)
C55995	PROMIS - Smoking negative health expectancies smoke make lung hurt scale	Scale related to an individual believing smoking makes his/her lungs hurt, as part of the PROMIS Smoking Negative Health Expectancies	Supplemental	PROMIS Item Bank v1.0 - Smoking: Negative Health Expectancies for Daily Smokers	False	General (For all diseases)	General (For all diseases)
C56561	PROMIS - Cognitive Function upset about problem with memory scale	Scale related to how often an individual has been upset about his/her problems with memory, concentration, or making mental mistakes in the past 7 days, as part of the PROMIS Cognitive Function	Supplemental	PROMIS Item Bank v2.0 - Cognitive Function	False	General (For all diseases)	General (For all diseases)
C54791	PROMIS - Dyspnea severity walk 50 pace scale	Scale related to the individual being able to walk 50 steps/paces on flat ground at a normal speed without stopping, as part of the PROMIS Dyspnea Severity	Supplemental	PROMIS Item Bank v1.0 - Dyspnea Severity	False	General (For all diseases)	General (For all diseases)
C55688	PROMIS - Dyspnea Functional limitations carry weigh less 5 pound scale	Scale related to an individual being able to carry something weighing less than 5 lbs (about 2 kg, like a houseplant) from one room to another, as part of the PROMIS Dyspnea Functional Limitations	Supplemental	PROMIS Item Bank v1.0 - Dyspnea Functional Limitations	False	General (For all diseases)	General (For all diseases)
C20805	Patient-Reported Outcome Measurement Information System (PROMIS) - Sleep restfulness assessment past week scale	The scale which represents how often the participant's sleep was restful in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS).	Supplemental	PROMIS Item Bank v1.0 - Sleep Disturbance	True	General (For all diseases)	General (For all diseases)
C55389	PROMIS - Positive consequences outgoing when drink scale	Scale related to if the individual felt outgoing when he/she drank, as part of the PROMIS Positive Consequences	Supplemental	PROMIS Item Bank v1.0 - Alcohol - Positive Consequences	False	General (For all diseases)	General (For all diseases)
C20739	Quality of Life - Emotional exhaustion assessment past week scale	The scale which represents how often the participant felt emotionally exhausted in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS) and Neuro-QOL Depression.	Supplemental	Neuro-QOL Adult Bank - Depression	True	General (For all diseases)	General (For all diseases)
C20850	Patient-Reported Outcome Measurement Information System (PROMIS) - Energy sufficient past week scale	The scale which represents how often the participant had enough energy in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS).	Supplemental	PROMIS Item Bank v1.0 - Sleep Related Impairment	True	General (For all diseases)	General (For all diseases)
C21316	Quality of Life - Stigma illness lost friend recent assessment scale	The scale representing how often the participant lost friends by telling them that they have this illness lately, as part of Neuro-QOL Stigma.	Supplemental	Neuro-QOL Adult Bank - Stigma	True	General (For all diseases)	General (For all diseases)
C21108	Visit present indicator	Indicator for the presence of the subject at the visit.	Supplemental	Visit Checklist	False	General (For all diseases)	General (For all diseases)
C21208	Quality of Life - Simple mistake more easily past week scale	The scale representing how often the participant made simple mistakes more easily in the past 7 days, as part of Neuro-QOL Cognitive Function.	Supplemental	Neuro-QOL Adult Bank - Cognitive Function	True	General (For all diseases)	General (For all diseases)
C18659	Unexpected adverse event indicator	The indicator of whether the adverse event is unexpected	Supplemental	Serious Adverse Events	False	General (For all diseases)	General (For all diseases)
C55745	PROMIS - Sleep Related Impairment had trouble stay awake during day scale	Scale related to an individual having trouble staying awake during the day, as part of the PROMIS Sleep Related Impairment	Supplemental	PROMIS Item Bank v1.0 - Sleep Related Impairment	True	General (For all diseases)	General (For all diseases)
C56377	PROMIS - Smoking social motivation smoke feel more relax with others scale	Scale related to an individual feeling as if smoking makes him/her feel more relaxed when he/she is with other people, as part of the PROMIS Smoking Social Motivation	Supplemental	PROMIS Item Bank v1.0 - Smoking: Social Motivations for Nondaily Smokers	False	General (For all diseases)	General (For all diseases)
C55490	PROMIS - Applied Cognition abilities remember where put things scale	Scale related to an individual being able to remember where he/she put things, like his/her keys or his/her wallet, as part of PROMIS Applied Cognition Abilities	Supplemental	PROMIS Item Bank v1.0 - Applied Cognition - Abilities	False	General (For all diseases)	General (For all diseases)
C56004	PROMIS - Smoking negative health expectancies smoke headache scale	Scale related to an individual feeling as if smoking gives him/her a headache, as part of the PROMIS Smoking Negative Health Expectancies	Supplemental	PROMIS Item Bank v1.0 - Smoking: Negative Health Expectancies for Daily Smokers	False	General (For all diseases)	General (For all diseases)
C56569	PROMIS - Life Satisfaction had what wanted scale	Scale related to an individual feeling as if he/she had what she/she wanted in life in the past 4 weeks, as part of the PROMIS Life Satisfaction	Supplemental	PROMIS Pediatric Item Bank v1.0 - Life Satisfaction-Short Form 4a	False	General (For all diseases)	General (For all diseases)
C54807	PROMIS - Dyspnea severity walk half mile scale	Scale related to the individual being able to walk 1/2 mile (almost 1 km) without stopping, as part of the PROMIS Dyspnea Severity	Supplemental	PROMIS Item Bank v1.0 - Dyspnea Severity	False	General (For all diseases)	General (For all diseases)

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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.