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
F2052-C20735	C20735	Quality of Life - Nothing interest assessment past week scale	The scale which represents how often the participant felt that nothing was interesting 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)
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)
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)
F2048-C21182	C21182	Quality of Life - Good work ability complete past week scale	The scale representing how often the participant's ability to do their work was as good as it could be (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)
F2054-C21259	C21259	Quality of Life - Satisfaction peaceful life recent assessment scale	The scale representing how often the participant felt their life was peaceful lately, as par of Neuro-QOL Positive Affect and Well-Being	Supplemental	Neuro-QOL Adult Bank - Positive Affect and Well-Being	True	General (For all diseases)	General (For all diseases)
F0013-C59687	C59687	COVID-19 first date	Date the participant/subject was first told or first thought that they had coronavirus disease 2019 (COVID-19)	Supplemental	Medical History	False	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)
F2048-C21190	C21190	Quality of Life - Work satisfactory complete past week scale	The scale representing how often the participant was able to do all of the work that people expected 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)
F2055-C20744	C20744	Patient-Reported Outcome Measurement Information System (PROMIS) - Friendship ability satisfaction past week scale	The scale which represents the extent of the participant's satisfaction with his/her ability to do things for his friends in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS)	Supplemental	Neuro-QOL Adult Bank - Satisfaction with SRA	True	General (For all diseases)	General (For all diseases)
F2048-C21150	C21150	Quality of Life - Regular friend activity ability complete past week scale	The scale representing how often the participant was able to do all of their regular activities with friends 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)
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-C20781	C20781	Quality of Life - Worry assessment past week scale	The scale which represents how often the participant felt worried 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)
F2055-C20753	C20753	Patient-Reported Outcome Measurement Information System (PROMIS) - Family relationship ability satisfaction past week scale	The scale which represents the extent of the participant's satisfaction with his/her ability to do things for his family in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS)	Supplemental	Neuro-QOL Adult Bank - Satisfaction with SRA	True	General (For all diseases)	General (For all diseases)
F2048-C21158	C21158	Quality of Life - Family activity want complete past week scale	The scale representing how often the participant was able to do all of the family 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)
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)
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)
F2055-C20769	C20769	Patient-Reported Outcome Measurement Information System (PROMIS) - Dependability assistance ability satisfaction past week scale	The scale which represents the extent of the participant's satisfaction with his/her ability to meet the needs of those who depend on him in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS)	Supplemental	Neuro-QOL Adult Bank - Satisfaction with SRA	True	General (For all diseases)	General (For all diseases)
F2048-C21166	C21166	Quality of Life - Regular leisure activity ability complete past week scale	The scale representing how often the participant was able to do all of their regular 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)
F0004-C20405	C20405	Serious adverse events anticipated indicator	Indicate whether the adverse event was anticipated	Supplemental	Serious Adverse Events	False	General (For all diseases)	General (For all diseases)
F2055-C21270	C21270	Quality of Life - Family need disappointment past week scale	The scale which represents the extent to which the participant was disappointed in their ability to meet the needs of their family 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-C21174	C21174	Quality of Life - Participant leisure activity satisfactory complete past week scale	The scale representing how often the participant could do all of the leisure activities that they wanted 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)
F2054-C21251	C21251	Quality of Life - Satisfaction life purpose recent assesment scale	The scale representing how often the participant felt a sense of purpose in their life lately, as part of Neuro-QOL Positive Affect and Well-Being	Supplemental	Neuro-QOL Adult Bank - Positive Affect and Well-Being	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)
F0009-C18659	C18659	Unexpected adverse event indicator	The indicator of whether the adverse event is unexpected	Supplemental	Adverse Events	False	General (For all diseases)	General (For all diseases)
F2050-C21206	C21206	Quality of Life - Remember errand not written difficulty scale	The scale which represents the amount of difficulty the participant currently has in remembering a list of 4 to 5 errands without writing it down, as part of Neuro-QOL Cognitive Function	Supplemental	Neuro-QOL Adult Bank - Cognitive Function	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.