CDE Catalog

***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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Amyotrophic Lateral Sclerosis
Cerebral Palsy
Chiari I Malformation
Congenital Muscular Dystrophy
Duchenne Muscular Dystrophy/Becker Muscular Dystrophy
Epilepsy
Facioscapulohumeral Muscular Dystrophy
Friedreich's Ataxia
Frontotemporal Dementia
General (For all diseases)
Headache
Huntington's Disease
Mitochondrial Disease
Multiple Sclerosis
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Myasthenia Gravis
Myotonic Muscular Dystrophy
NeuroRehab
Neuromuscular Diseases
Parkinson's Disease
Spinal Cord Injury
Spinal Muscular Atrophy
Sport-Related Concussion
Stroke
Traumatic Brain Injury
Unruptured Cerebral Aneurysms and Subarachnoid Hemorrhage
Displaying 76 - 100 of 740
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.
CDE ID CDE Name Definition Classification CRF Name Copyrighted or trademarked Disease Name Subdisease Name
C21115 Visit week count

Count of days in a week where a visit was made

 Supplemental Visit Schedule False General (For all diseases) General (For all diseases)
C21137 Quality of Life - Movement dress pullover shirt off difficulty scale

The scale which represents the amount of difficulty the participant currently has in taking off a pullover shirt, as part of Neuro-QOL Upper Extremity

 Supplemental Neuro-QOL Adult Bank - Upper Extremity True General (For all diseases) General (For all diseases)
C21326 Quality of Life - Movement chair sit stand difficulty scale

The scale which represents the amount of difficulty the participant currently has in sitting down on and standing up from a chair with arms, 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)
C21188 Quality of Life - Work usual ability past week scale

The scale representing how often the participant was able to do all of their usual work 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)
C21228 Quality of Life - Conversation familiar people difficulty scale

The scale which represents the amount of difficulty the participant currently has in carrying on a conversation with a small group of familiar people (e.g., family or a few friends), as part of Neuro-QOL Communication

 Supplemental Neuro-QOL Adult Bank - Communication True General (For all diseases) General (For all diseases)
C21148 Quality of Life - Regular family activity ability past week scale

The scale representing how often the participant was able to do all of their regular family 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)
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)
C20761 Patient-Reported Outcome Measurement Information System (PROMIS) - Daily routine performance time spent satisfaction past week scale

The scale which represents the extent of the participant's satisfaction with the amount of time he/she spent performing daily routines 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)
C21268 Quality of Life - Household chore satisfaction ability past week scale

The scale which represents the extent to which the participant was satisfied with their ability to do household chores and tasks 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)
C21249 Quality of Life - Satisfaction life many area interest recent assessment scale

The scale representing how often the participant was interested in many areas of 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)
C59688 COVID-19 first date not applicable status

Status denoting that the date the participant/subject was first told or first thought that they had coronavirus disease 2019 (COVID-19) is not applicable

 Supplemental Medical History False General (For all diseases) General (For all diseases)
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)
C21257 Quality of Life - Satisfaction confident recent assessment scale

The scale representing how often the participant felt confident 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)
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)
C20742 Patient-Reported Outcome Measurement Information System (PROMIS) - Social activity current level satisfaction past week scale

The scale which represents the extent of the participant's satisfaction with his/her current level of social activity 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)
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)
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 Neuro-QOL Adult Bank - Satisfaction with SRA True General (For all diseases) General (For all diseases)
C21149 Quality of Life - Social interaction friend ability past week scale

The scale representing how often the participant was able to socialize with their 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)
C21146 Quality of Life - Movement bend down pick up cloth ability scale

The scale which represents the extent to which the participant was able to bend down and pick up clothing from the floor Neuro-QOL Upper Extremity

 Supplemental Neuro-QOL Adult Bank - Upper Extremity True General (For all diseases) General (For all diseases)
C21244 Quality of Life - Satisfaction life purpose recent assessment scale

The scale representing how often the participant felt their life had purpose 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)
C20780 Quality of Life - Fear terrible future occurrence past week scale

The scale which represents how often the participant felt something awful would happen 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)
C20697 Quality of Life - Hope loss assessment past week scale

The scale which represents how often the participant wanted to give up on everything 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)
C21157 Quality of Life - Family activity expectation complete past week scale

The scale representing how often the participant was able to do all of the family activities 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)
C20554 Quality of Life in Neurological Disorders (Neuro-Qol) - Limit social activity fatigue assessment past week scale

The scale representing how often the participant had to limit social activity because of being 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)
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)
Displaying 76 - 100 of 740

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.