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 176 - 200 of 869
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
C56448 PROMIS - Pain Behavior when pain stay still scale

Scale related to the individual feeling as if when he/she was in pain, he/she tried to stay very still in the past 7 days, as part of the PROMIS Pain Behavior

 Supplemental PROMIS Item Bank v1.1 - Pain Behavior False General (For all diseases) General (For all diseases)
C21263 Quality of Life - Satisfaction hope during bad episode recent assessment scale

The scale representing how often the participant still had hope even when things were going badly 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)
C58781 Gender identity type other text

The free-text field related to 'Gender identity type', specifying other text

 Supplemental General Core False General (For all diseases) General (For all diseases)
C21240 Quality of Life - Movement dark room no fall walk difficulty scale

The scale which represents the amount of difficulty the participant currently has in walking in a dark room without falling, 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)
C21136 Quality of Life - Movement dress pullover shirt on difficulty scale

The scale which represents the amount of difficulty the participant currently has in putting on 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)
C21218 Quality of Life - Reaction slow past week scale

The scale representing how often the participant reacted slowly to things that were said and done 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)
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 PROMIS Item Bank v1.0 - Social Activity True General (For all diseases) General (For all diseases)
C21324 Quality of Life - Movement walk fifteen minute duration ability scale

The scale which represents the extent to which the participant was able to go for a walk of at least 15 minutes, as part of Neuro-QOL Lower Extremity Function and Patient-Reported Outcome Measurement Information System (PROMIS) Mobility

 Supplemental Neuro-QOL Adult Bank - Lower Extremity Function True General (For all diseases) General (For all diseases)
C21144 Quality of Life - Movement fingernail trim ability scale

The scale which represents the extent to which the participant was able to trim their fingernails, 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)
C21226 Quality of Life - Write task list difficulty scale

The scale which represents the amount of difficulty the participant currently has in writing notes to himself/herself or 'to do' lists, as part of Neuro-QOL Communication

 Supplemental Neuro-QOL Adult Bank - Communication 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 PROMIS Item Bank v1.0 - Social Activity True General (For all diseases) General (For all diseases)
C21241 Quality of Life - Satisfaction well being recent asssement scale

The scale representing how often the participant had a sense of well-being 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)
C20550 Quality of Life in Neurological Disorders (Neuro-Qol) - Frustration tired for action fatigue assessment past week scale

The scale representing how often the participant felt frustrated by being too tired to do the things they wanted to do 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)
C20693 Quality of Life - Other people withdrawal assessment past week scale

The scale which represents how often the participant withdrew from other people 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)
C56511 Patient-Reported Outcome Measurement Information System (PROMIS) - Pain Interference pain prevent from walk more 1 mile scale

Scale related to how often pain prevented an individual from walking more than 1 mile 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)
C21121 Subject zip postal code number

The number of the subject/participant's zip/postal code

 Supplemental Participant/Subject Contact Information False General (For all diseases) General (For all diseases)
C20571 Quality of Life in Neurological Disorders (Neuro-Qol) - Poor appetite fatigue assessment past week scale

The scale representing how often the participant was too tired to eat 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)
C20730 Quality of Life - Unhappiness assessment past week scale

The scale which represents how often the participant felt unhappy 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)
C56519 Patient-Reported Outcome Measurement Information System (PROMIS) - Pain Interference pain prevent sit 1 hour more scale

Scale related to how often an individual's pain prevented him/her from sitting for more than one hour 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)
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)
C21202 Quality of Life - Manage time daily activity difficulty scale

The scale which represents the amount of difficulty the participant currently has in managing their time to do most of their daily activities, as part of Neuro-QOL Cognitive Function

 Supplemental Neuro-QOL Adult Bank - Cognitive Function True General (For all diseases) General (For all diseases)
C21111 Form not completed indicator

Indicator for the incompletion of the form

 Supplemental Visit Checklist False General (For all diseases) General (For all diseases)
C20415 Serious adverse event report completed date

Date when the report on the adverse event was completed

 Supplemental Serious Adverse Events False General (For all diseases) General (For all diseases)
C20686 Patient-Reported Outcome Measure Information System (PROMIS) - standard error value

The value of the Standard Error (a statistical measure of variance that represents the "margin of error" for the T-score) representing the possible range of the actual final score based upon the scaled T-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)
C21232 Quality of Life - Mistake self critical past week scale

The scale representing how often the participant was critical of himself/herself for their mistakes in the past 7 days, as part of Neuro-QOL Depression

 Supplemental Neuro-QOL Adult Bank - Depression True General (For all diseases) General (For all diseases)
Displaying 176 - 200 of 869

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.