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

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
F2057-C21297	C21297	Quality of Life - Stigma illness uncomfortable other people recent assessment scale	The scale representing how often some people seemed uncomfortable with the participant because of their illness lately, as part of Neuro-QOL Stigma	Supplemental	Neuro-QOL Adult Bank - Stigma	True	General (For all diseases)	General (For all diseases)
F2057-C21296	C21296	Quality of Life - Stigma illness embarrassment recent assessment scale	The scale representing how often the participant felt embarrassed about their illness lately, as part of Neuro-QOL Stigma	Supplemental	Neuro-QOL Adult Bank - Stigma	True	General (For all diseases)	General (For all diseases)
F2057-C21295	C21295	Quality of Life - Stigma illness avoid visual contact recent assessment scale	The scale representing how often people avoided looking at the participant because of their illness lately, as part of Neuro-QOL Stigma	Supplemental	Neuro-QOL Adult Bank - Stigma	True	General (For all diseases)	General (For all diseases)
F2057-C21294	C21294	Quality of Life - Stigma illness left out event recent assessment scale	The scale representing how often the participant felt left out of things because of their illness lately, as part of Neuro-QOL Stigma	Supplemental	Neuro-QOL Adult Bank - Stigma	True	General (For all diseases)	General (For all diseases)
F2057-C21293	C21293	Quality of Life - Stigma illness recent assessment scale	The scale representing how often the participant was avoided by some people because of their illness lately, as part of Neuro-QOL Stigma	Supplemental	Neuro-QOL Adult Bank - Stigma	True	General (For all diseases)	General (For all diseases)
F2056-C21292	C21292	Quality of Life - Middle night physical tension past week scale	The scale representing how often the participant felt physically tense during the middle of the night or early morning hours 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-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)
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)
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-C21288	C21288	Quality of Life - Force awake morning past week scale	The scale representing how often the participant had to force himself/herself to get up in the morning 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)
F2055-C21287	C21287	Quality of Life - Work performance limitation bother past week scale	The scale which represents the extent to which the participant was bothered by limitations in performing their work 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)
F2055-C21286	C21286	Quality of Life - Work ability satisfication past week scale	The scale which represents the extent to which the participant was satisfied with their ability to work 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)
F2055-C21285	C21285	Quality of Life - Personal responsibility care ability satisfaction past week scale	The scale which represents the extent to which the participant was satisfied with their ability to take care of personal and household responsibilities 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)
F2055-C21284	C21284	Quality of Life - Work home limitation bother past week scale	The scale which represents the extent to which the participant was bothered by limitations in performing their work (include work at home) 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)
F2055-C21283	C21283	Quality of Life - Personal responsibility care ability disappointment past week scale	The scale which represents the extent to which the participant was disappointed in their ability to take care of personal and household responsibilities 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)
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)
F2055-C21281	C21281	Quality of Life - Work home ability disappointment past week scale	The scale which represents the extent to which the participant was disappointed by their ability to work (include work at home) 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)
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)
F2055-C21279	C21279	Quality of Life - Work people disappointment self-assessment past week scale	The scale which represents the extent to which the participant felt that they were disappointing to other people at work 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)
F2055-C21278	C21278	Quality of Life - Leisure activity limitation bother past week scale	The scale which represents the extent to which the participant was bothered by limitations in doing their hobbies or leisure 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)
F2055-C21277	C21277	Quality of Life - Leisure activity ability disappointment past week scale	The scale which represents the extent to which the participant was disappointed in their ability to do leisure activites 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)
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)
F2055-C21275	C21275	Quality of Life - Social communication maintain ability disappointment past week scale	The scale which represents the extent to which the participant was disappointed in their ability to keep in touch with others 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)
F2055-C21274	C21274	Quality of Life - Friend socialize ability disappointment past week scale	The scale which represents the extent to which the participant was disappointed in their ability to socialize with their friends 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)
F2055-C21273	C21273	Quality of Life - Friendship action ability disappointment past week scale	The scale which represents the extent to which the participant was disappointed in their ability to do things for their friends 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)

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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.