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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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.
Select all	CDE ID	CDE Name	Definition	Classification	CRF Name	Copyrighted or trademarked	Disease Name	Subdisease Name
F2052-C20739	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)
F2052-C20728	C20728	Quality of Life - Discouragement future assessment past week scale	The scale which represents how often the participant felt discouraged about the future 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)
F2052-C21235	C21235	Quality of Life - Depression help need past week scale	The scale representing how often the participant felt like they needeed help for their depression in the past 7 days, as part of Neuro-QOL Depression Adult Bank	Supplemental	Neuro-QOL Adult Bank - Depression	True	General (For all diseases)	General (For all diseases)
F2052-C20705	C20705	Quality of Life - Depression assessment past week scale	The scale which represents how often the participant felt depressed 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)
F2049-C21196	C21196	Quality of Life - Death worry past week scale	The scale representing how often the participant worried about dying in the past 7 days, as part of Neuro-QOL Anxiety	Supplemental	Neuro-QOL Adult Bank - Anxiety	True	General (For all diseases)	General (For all diseases)
F2055-C21280	C21280	Quality of Life - Daily routine performance disappointment past week scale	The scale which represents the extent to which the participant was disappointed in their ability to perform their daily routines in the past 7 days, as part of Neuro-QOL Satisfaction with SRA	Supplemental	Neuro-QOL Adult Bank - Satisfaction with SRA	True	General (For all diseases)	General (For all diseases)
F2048-C21153	C21153	Quality of Life - Daily routine perform past week scale	The scale representing how often the participant was able to perform their daily routines in the past 7 days, as part of Neuro-QOL Ability to Participate in SRA	Supplemental	Neuro-QOL Adult Bank - Ability to Participate in SRA	True	General (For all diseases)	General (For all diseases)
F2055-C21282	C21282	Quality of Life - Daily routine limitation bother past week scale	The scale which represents the extent to which the participant was bothered by limitations in performing their daily routines in the past 7 days, as part of Neuro-QOL Satisfaction with SRA	Supplemental	Neuro-QOL Adult Bank - Satisfaction with SRA	True	General (For all diseases)	General (For all diseases)
F2051-C21228	C21228	Quality of Life - Conversation familiar people difficulty scale	The scale which represents the amount of difficulty the participant currently has in carrying on a conversation with a small group of familiar people (e.g., family or a few friends), as part of Neuro-QOL Communication	Supplemental	Neuro-QOL Adult Bank - Communication	True	General (For all diseases)	General (For all diseases)
F2048-C21169	C21169	Quality of Life - Community activity want complete past week scale	The scale representing how often the participant was able to do all of the community activities that they wanted to do in the past 7 days, as part of Neuro-QOL Ability to Participate in SRA	Supplemental	Neuro-QOL Adult Bank - Ability to Participate in SRA	True	General (For all diseases)	General (For all diseases)
F2055-C21276	C21276	Quality of Life - Community activity ability other people disappointment self-assessment past week scale	The scale which represents the extent to which the participant felt that others were disappointed in their ability to do community activities in the past 7 days, as part of Neuro-QOL Satisfaction with SRA	Supplemental	Neuro-QOL Adult Bank - Satisfaction with SRA	True	General (For all diseases)	General (For all diseases)
F2048-C21175	C21175	Quality of Life - Community activity ability complete past week scale	The scale representing how often the participant was able to do all of the community activities that people expect them to do in the past 7 days, as part of Neuro-QOL Ability to Participate in SRA	Supplemental	Neuro-QOL Adult Bank - Ability to Participate in SRA	True	General (For all diseases)	General (For all diseases)
F2050-C21217	C21217	Quality of Life - Clear thought difficulty past week scale	The scale representing how often the participant had trouble thinking clearly 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)
F2051-C21230	C21230	Quality of Life - Clear telephone speech difficulty scale	The scale which represents the amount of difficulty the participant currently has in speaking clearly enough to use the telephone, as part of Neuro-QOL Communication	Supplemental	Neuro-QOL Adult Bank - Communication	True	General (For all diseases)	General (For all diseases)
F2050-C21199	C21199	Quality of Life - Check financial document accuracy difficulty scale	The scale which represents the amount of difficulty the participant currently has in checking the accuracy of financial documents (e.g., bills, checkbook, or bank statements), as part of Neuro-QOL Cognitive Function	Supplemental	Neuro-QOL Adult Bank - Cognitive Function	True	General (For all diseases)	General (For all diseases)
F2056-C21291	C21291	Quality of Life - Cancel friend activity bad sleep past week scale	The scale representing how often the participant avoided or cancelled activities with their friends because they were tired from having a bad night's sleep in the past 7 days, as part of Neuro-QOL Sleep Disturbance	Supplemental	Neuro-QOL Adult Bank - Sleep Disturbance	True	General (For all diseases)	General (For all diseases)
F2049-C20794	C20794	Quality of Life - Calmness difficulty assessment past week scale	The scale which represents how often the participant had difficulty calming down in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS) and Neuro-QOL Anxiety	Supplemental	Neuro-QOL Adult Bank - Anxiety	True	General (For all diseases)	General (For all diseases)
F2056-C21289	C21289	Quality of Life - Bad dream sleep trouble past week scale	The scale representing how often the participant had trouble sleeping because of dreams in the past 7 days, as part of Neuro-QOL Sleep Disturbance	Supplemental	Neuro-QOL Adult Bank - Sleep Disturbance	True	General (For all diseases)	General (For all diseases)
F2056-C21290	C21290	Quality of Life - Awake pain past week scale	The scale representing how often pain woke the participant up in the last 7 days, as part of Neuro-QOL Sleep Disturbance	Supplemental	Neuro-QOL Adult Bank - Sleep Disturbance	True	General (For all diseases)	General (For all diseases)
F2050-C21221	C21221	Quality of Life - Attention difficulty past week scale	The scale representing how often the participant had to work really hard to pay attention or they would make a mistake 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)
F2049-C20766	C20766	Quality of Life - Anxiousness assessment past week scale	The scale which represents how often the participant felt anxious in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS) and Neuro-QOL Anxiety	Supplemental	Neuro-QOL Adult Bank - Anxiety	True	General (For all diseases)	General (For all diseases)
F2049-C20768	C20768	Quality of Life - Anxiety assistance assessment past week scale	The scale which represents how often the participant felt like help was needed for his anxiety in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS) and Neuro-QOL Anxiety	Supplemental	Neuro-QOL Adult Bank - Anxiety	True	General (For all diseases)	General (For all diseases)
F2050-C21209	C21209	Quality of Life - Almost remember word past week scale	The scale representing how often words the participant wanted to use seemed to be on the "tip of their tongue" 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)
F2048-C21185	C21185	Quality of Life - All work satisfactory complete past week scale	The scale representing how often the participant was able to do all of the work that people expected of them (include work at home) in the past 7 days, as part of Neuro-QOL Ability to Participate in SRA	Supplemental	Neuro-QOL Adult Bank - Ability to Participate in SRA	True	General (For all diseases)	General (For all diseases)
F2048-C21152	C21152	Quality of Life - Activity leisure participate past week scale	The scale representing how often the participant was able to participate in leisure activities in the past 7 days, as part of Neuro-QOL Ability to Participate in SRA	Supplemental	Neuro-QOL Adult Bank - Ability to Participate in SRA	True	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.