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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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
F2067-C20759	C20759	Patient-Reported Outcome Measurement Information System (PROMIS) - Work ability satisfaction past week scale	The scale which represents how often the participant's satisfaction with his/her ability to work in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS)	Supplemental	PROMIS Item Bank v1.0 - Social Activity	True	General (For all diseases)	General (For all diseases)
F2053-C21330	C21330	Quality of Life - Movement uneven surface walk difficulty scale	The scale which represents the amount of difficulty the participant currently has in walking on uneven surfaces (e.g., grass, dirt road or sidewalk), as part of Neuro-QOL Lower Extremity Function	Supplemental	Neuro-QOL Adult Bank - Lower Extremity Function	True	General (For all diseases)	General (For all diseases)
F2059-C20548	C20548	Quality of Life in Neurological Disorders (Neuro-Qol) - No household chore fatigue assessment past week scale	The scale representing how often the participant felt too tired to do household chores in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol)	Supplemental	Neuro-QOL Adult Bank - Fatigue	False	General (For all diseases)	General (For all diseases)
F2052-C20691	C20691	Quality of Life - Nothing interest future assessment past week scale	The scale which represents how often the participant felt that he/she had nothing to look forward to 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)
F2654-C56509	C56509	Patient-Reported Outcome Measurement Information System (PROMIS) - Pain Interference pain make anxious scale	Scale related to how often pain made an individual feel anxious in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS)	Supplemental	PROMIS Item Bank v1.1 - Pain Interference	False	General (For all diseases)	General (For all diseases)
F0005-C21119	C21119	Subject home city name	Name of city in which the subject/participant lives	Supplemental	Participant/Subject Contact Information	False	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)
F2059-C20566	C20566	Quality of Life in Neurological Disorders (Neuro-Qol) - Difficulty finish task fatigue assessment past week scale	The scale representing how often the participant had trouble finishing things because they were too tired in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol)	Supplemental	Neuro-QOL Adult Bank - Fatigue	False	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)
F2654-C56517	C56517	Patient-Reported Outcome Measurement Information System (PROMIS) - Pain Interference hard to plan social activities unsure pain scale	Scale related to how often it was hard to plan social activities because an individual didn't know if he/she would be in pain in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS)	Supplemental	PROMIS Item Bank v1.1 - Pain Interference	False	General (For all diseases)	General (For all diseases)
F2057-C21308	C21308	Quality of Life - Stigma illness difficult maintain cleanliness recent assessment scale	The scale representing how often it was hard for the participant to stay neat and clean 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)
F2050-C21200	C21200	Quality of Life - Read follow complex instruction difficulty scale	The scale which represents the amount of difficulty the participant currently has in reading and following complex instructions (e.g., directions for a new medication), as part of Neuro-QOL Cognitive Function	Supplemental	Neuro-QOL Adult Bank - Cognitive Function	True	General (For all diseases)	General (For all diseases)
F0006-C21109	C21109	Visit assessment complete type	Type of assessment completed during visit	Supplemental	Visit Checklist	False	General (For all diseases)	General (For all diseases)
F2061-C20684	C20684	Patient-Reported Outcome Measure Information System (PROMIS) - raw score	The participant's raw score on the PROMIS form, as part of the Patient-Reported Outcome Measurement Information System (PROMIS)	Supplemental	PROMIS - Scoring	False	General (For all diseases)	General (For all diseases)
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)
F2662-C56586	C56586	PROMIS - Pain Behavior ask for someone to help scale	Scale related to the individual asking someone to help him/her in the past 7 days, as part of the PROMIS Pain Behavior	Supplemental	PROMIS Pediatric Item Bank v1.0 - Pain Behavior-Short Form 8a	False	General (For all diseases)	General (For all diseases)
F2057-C21316	C21316	Quality of Life - Stigma illness lost friend recent assessment scale	The scale representing how often the participant lost friends by telling them that 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)
F2050-C21208	C21208	Quality of Life - Simple mistake more easily past week scale	The scale representing how often the participant made simple mistakes more easily 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)
F2067-C20743	C20743	Patient-Reported Outcome Measurement Information System (PROMIS) - Important community activity ability satisfaction past week scale	The scale which represents the extent of the participant's satisfaction with his/her ability to do all of the community activities that are really important to him in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS)	Supplemental	PROMIS Item Bank v1.0 - Social Activity	True	General (For all diseases)	General (For all diseases)
F2053-C21238	C21238	Quality of Life - Movement outdoor slippery surface walk difficulty scale	The scale which represents the amount of difficulty the participant currently has in walking on a slippery surface, outdoors, as part of Neuro-QOL Lower Extremity Function	Supplemental	Neuro-QOL Adult Bank - Lower Extremity Function	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)
F2050-C21216	C21216	Quality of Life - Familiar person name remember difficulty past week scale	The scale representing how often the participant had trouble remembering the name of a familiar person 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)
F2067-C20751	C20751	Patient-Reported Outcome Measurement Information System (PROMIS) - Home fun ability satisfaction past week scale	The scale which represents the extent of the participant's satisfaction with his/her ability to do things for fun at home in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS)	Supplemental	PROMIS Item Bank v1.0 - Social Activity	True	General (For all diseases)	General (For all diseases)
F2053-C21322	C21322	Quality of Life - Movement errand shop ability scale	The scale which represents the extent to which the participant was able to run errands and shop, as part of Neuro-QOL Lower Extremity Function	Supplemental	Neuro-QOL Adult Bank - Lower Extremity Function	True	General (For all diseases)	General (For all diseases)
F0004-C18659	C18659	Unexpected adverse event indicator	The indicator of whether the adverse event is unexpected	Supplemental	Serious Adverse Events	False	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.