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 1 - 25 of 869
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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.
CDE ID CDE Name Definition Classification CRF Name Copyrighted or trademarked Disease Name Subdisease Name
C20687 Patient-Reported Outcome Measure Information System (PROMIS) - T-score value

The value of the T-score, a standardized score with a mean of 50 and a standard deviation (SD) of 10 representing the rescaled raw score, as part of the Patient-Reported Outcome Measurement Information System (PROMIS)

 Supplemental PROMIS - Scoring False General (For all diseases) General (For all diseases)
C21233 Quality of Life - Feel unloved past week scale

The scale representing how often the participant felt unloved 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)
C56589 PROMIS - Pain Behavior talk about pain scale

Scale related to the individual talking about his/her pain 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)
C21129 Quality of Life - Movement touch-tone phone call ability scale

The scale which represents the extent to which the participant was able to make a phone call using a touch tone key-pad, as part of Neuro-QOL Upper Extremity

 Supplemental Neuro-QOL Adult Bank - Upper Extremity True General (For all diseases) General (For all diseases)
C21211 Quality of Life - Trouble keep track interrupt past week scale

The scale representing how often the participant had trouble keeping track of what they were doing if they were interrupted 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)
C20746 Patient-Reported Outcome Measurement Information System (PROMIS) - Current level friend activity satisfaction past week scale

The scale which represents the extent of the participant's satisfaction with his/her current level of activities with friends 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)
C21317 Quality of Life - Movement sit stand toilet seat scale

The scale which represents the extent to which the participant was able to get on and off the toilet, 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)
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)
C21219 Quality of Life - Thought formation trouble past week scale

The scale representing how often the participant had trouble forming thoughts 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)
C18767 Temperature measurement other text

The free-text field related to 'Temperature measurement anatomic site' specifying other text. Anatomic site on or within the body where the temperature was measured

 Supplemental Vital Signs False General (For all diseases) General (For all diseases)
C20754 Patient-Reported Outcome Measurement Information System (PROMIS) - Work amount satisfaction past week scale

The scale which represents how often the participant's satisfaction with how much work he/she could do 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)
C21325 Quality of Life - Movement armless straight chair stand up difficulty scale

The scale which represents the amount of difficulty the participant currently has in standing up from an armless straight chair (e.g., dining room chair), 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)
C21145 Quality of Life - Movement toenail trim ability scale

The scale which represents the extent to which the participant was able to cut their toe nails, as part of Neuro-QOL Upper Extremity

 Supplemental Neuro-QOL Adult Bank - Upper Extremity True General (For all diseases) General (For all diseases)
C21227 Quality of Life - Family friend phone understand difficulty scale

The scale which represents the amount of difficulty the participant currently has in understanding family and friends over the phone, as part of Neuro-QOL Communication

 Supplemental Neuro-QOL Adult Bank - Communication True General (For all diseases) General (For all diseases)
C20763 Patient-Reported Outcome Measurement Information System (PROMIS) - Household chore task ability satisfaction past week scale

The scale which represents the extent of the participant's satisfaction with his/her ability to do household chores/tasks 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)
C21242 Quality of Life - Satisfaction hopeful recent assessment scale

The scale representing how often the participant felt hopeful 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)
C20552 Quality of Life in Neurological Disorders (Neuro-Qol) - Tiredness fatigue asssessment past week scale

The scale representing how often the participant felt 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)
C20694 Quality of Life - Nothing happy assessment past week scale

The scale which represents how often the participant felt that nothing could cheer him up 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)
C56512 Patient-Reported Outcome Measurement Information System (PROMIS) - Pain Interference pain prevent from stand more 1 hour scale

Scale related to how often pain prevented an individual from standing 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)
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)
C21122 Subject home phone number

The home phone number of the subject/participant

 Supplemental Participant/Subject Contact Information False General (For all diseases) General (For all diseases)
C20408 Serious adverse event report type

Specify which type of report is being completed for the adverse event

 Supplemental Serious Adverse Events False General (For all diseases) General (For all diseases)
C20572 Quality of Life in Neurological Disorders (Neuro-Qol) - Rest during day fatigue assessment past week scale

The scale representing how often the participant was so tired that they needed rest during the day 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)
C20731 Quality of Life - Life no reason assessment past week scale

The scale which represents how often the participant felt he/she had no reason for living 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)
C56520 Patient-Reported Outcome Measurement Information System (PROMIS) - Pain Interference pain keep stand position scale

Scale related to how often pain kept individual from getting into a standing position 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)
Displaying 1 - 25 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.