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
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)
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-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-C20816	C20816	Patient-Reported Outcome Measurement Information System (PROMIS) - Sleep difficulty assessment past week scale	The scale which represents how often the participant had difficulty falling asleep in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS)	Supplemental	Neuro-QOL Adult Bank - Sleep Disturbance	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-C21302	C21302	Quality of Life - Stigma illness ridicule recent assessment scale	The scale representing how often people made fun of 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-C21309	C21309	Quality of Life - Stigma illness people ignore good input recent assessment scale	The scale representing how often people tended to ignore the participant's good points 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-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-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-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-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-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-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-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-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-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-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-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)
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-C21300	C21300	Quality of Life - Stigma illness blame recent assessment scale	The scale representing how often some people acted as though it was the participant's own fault 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)
F2057-C21307	C21307	Quality of Life - Stigma illness affect appearance unhappiness recent assessment scale	The scale representing how often the participant was unhappy about the way their illness affected their appearance lately, as part of Neuro-QOL Stigma	Supplemental	Neuro-QOL Adult Bank - Stigma	True	General (For all diseases)	General (For all diseases)
F2057-C21315	C21315	Quality of Life - Stigma illness other people lost job recent assessment scale	The scale representing how often people with the participant's illness lost their jobs when their employers found out about it 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.