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
F2058-C21131	C21131	Quality of Life - Movement pen pencil write ability scale	The scale which represents the extent to which the participant was able to write with a pen or pencil, as part of Neuro-QOL Upper Extremity and Patient-Reported Outcomes Measurement Information System (PROMIS)	Supplemental	Neuro-QOL Adult Bank - Upper Extremity	True	General (For all diseases)	General (For all diseases)
F2058-C21139	C21139	Quality of Life - Movement medication open difficulty scale	The scale which represents the amount of difficulty the participant currently has in opening medications or vitamin containers (e.g., childproof containers, small bottles) as part of Neuro-QOL Upper Extremity	Supplemental	Neuro-QOL Adult Bank - Upper Extremity	True	General (For all diseases)	General (For all diseases)
F2058-C21132	C21132	Quality of Life - Movement zipper open close ability scale	The scale which represents the extent to which the participant was able to open and close a zipper, as part of Neuro-QOL Upper Extremity and Patient-Reported Outcomes Information Measurement System (PROMIS) Upper Extremity	Supplemental	Neuro-QOL Adult Bank - Upper Extremity	True	General (For all diseases)	General (For all diseases)
F2058-C21140	C21140	Quality of Life - Movement open prior open jar ability scale	The scale which represents the extent to which the participant was able to open previously opened jars, as part of Neuro-QOL Upper Extremity	Supplemental	Neuro-QOL Adult Bank - Upper Extremity	True	General (For all diseases)	General (For all diseases)
F2058-C21133	C21133	Quality of Life - Movement body wash dry ability scale	The scale which represents the extent to which the participant was able to wash and dry their body, as part of Neuro-QOL Upper Extremity	Supplemental	Neuro-QOL Adult Bank - Upper Extremity	True	General (For all diseases)	General (For all diseases)
F2058-C21141	C21141	Quality of Life - Movement full food plate hold ability scale	The scale which represents the extent to which the participant was able to hold a plate full of food, as part of Neuro-QOL Upper Extremity and Patient-Reported Outcome Measurement Information System (PROMIS) Upper Extremity	Supplemental	Neuro-QOL Adult Bank - Upper Extremity	True	General (For all diseases)	General (For all diseases)
F2058-C21134	C21134	Quality of Life - Movement shampoo hair ability scale	The scale which represents the extent to which the participant was able to shampoo their hair, as part of Neuro-QOL Upper Extremity and Patient-Reported Outcome Measurement Information System (PROMIS) Upper Extremity	Supplemental	Neuro-QOL Adult Bank - Upper Extremity	True	General (For all diseases)	General (For all diseases)
F2058-C21142	C21142	Quality of Life - Movement pull trouser on ability scale	The scale which represents the extent to which the participant was able to pull on trousers, as part of Neuro-QOL Upper Extremity	Supplemental	Neuro-QOL Adult Bank - Upper Extremity	True	General (For all diseases)	General (For all diseases)
F2058-C21127	C21127	Quality of Life - Movement turn key lock ability scale	The scale which represents the extent to which the participant was able to turn a key in a lock, as part of Neuro-QOL Upper Extremity and Patient-Reported Outcomes Measurement Information System (PROMIS) Upper Extremity	Supplemental	Neuro-QOL Adult Bank - Upper Extremity	True	General (For all diseases)	General (For all diseases)
F2058-C21135	C21135	Quality of Life - Movement spoon eat meal difficulty scale	The scale which represents the amount of difficulty the participant currently has in using a spoon to eat a meal, as part of Neuro-QOL Upper Extremity	Supplemental	Neuro-QOL Adult Bank - Upper Extremity	True	General (For all diseases)	General (For all diseases)
F2058-C21143	C21143	Quality of Life - Movement button shirt ability scale	The scale which represents the extent to which the participant was able to button their shirt, as part of Neuro-QOL Upper Extremity and Patient Repoted Outcome Measurement Information System (PROMIS) Upper Extremity	Supplemental	Neuro-QOL Adult Bank - Upper Extremity	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-C21310	C21310	Quality of Life - Stigma illness burden worry recent assessment scale	The scale representing how often the participant worried that he/she was a burden to others 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-C21311	C21311	Quality of Life - Stigma illness speech embarassment recent assessment scale	The scale representing how often the participant felt embarassed about their speech lately, as part of Neuro-QOL Stigma	Supplemental	Neuro-QOL Adult Bank - Stigma	True	General (For all diseases)	General (For all diseases)
F2057-C21303	C21303	Quality of Life - Stigma illness social situation embarassment recent assessment scale	The scale representing how often the participant felt embarassed in social situations 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-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-C21312	C21312	Quality of Life - Stigma illness different feel compare other people recent assessment scale	The scale representing how often the participant felt different from others 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-C21304	C21304	Quality of Life - Stigma illness stranger stare recent assessment scale	The scale representing how often strangers tended to stare 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-C21298	C21298	Quality of Life - Stigma illness physical limit embarassment recent assessment scale	The scale representing how often the participant felt embarassed because of their physical limitations lately, as part of Neuro-QOL Stigma	Supplemental	Neuro-QOL Adult Bank - Stigma	True	General (For all diseases)	General (For all diseases)
F2057-C21313	C21313	Quality of Life - Stigma illness blame self problem recent assessment scale	The scale representing how often the participant tended to blame himself/herself for their problems lately, as part of Neuro-QOL Stigma	Supplemental	Neuro-QOL Adult Bank - Stigma	True	General (For all diseases)	General (For all diseases)
F2057-C21305	C21305	Quality of Life - Stigma illness other people attitude worry recent assessment scale	The scale representing how often the participant worried about other people's attitudes towards him/her lately, as part of Neuro-QOL Stigma	Supplemental	Neuro-QOL Adult Bank - Stigma	True	General (For all diseases)	General (For all diseases)
F2057-C21299	C21299	Quality of Life - Stigma illness unkind treatment recent assessment scale	The scale representing how often people were unkind to 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-C21314	C21314	Quality of Life - Stigma illness new friend avoidance recent assessment scale	The scale representing how often the participant avoided making new friends to avoid telling others 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-C21306	C21306	Quality of Life - Stigma illness unfair treatment recent assessment scale	The scale representing how often the participant was treated unfairly by others 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)

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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.