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 26 - 50 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
C21198 Quality of Life - Keep track time difficulty scale

The scale which represents the amount of difficulty the participant currently has in keeping track of time (e.g., using a clock), as part of Neuro-QOL Cognitive Function

 Supplemental Neuro-QOL Adult Bank - Cognitive Function True General (For all diseases) General (For all diseases)
C20577 Quality of Life in Neurological Disorders (Neuro-Qol) - Limit social activity physical weakness fatigue asssessment past week scale

The scale representing how often the participant had to limit social activity because of being physically weak 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)
C20736 Quality of Life - Pessimism assessment past week scale

The scale which represents how often the participant felt pessimistic 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)
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)
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)
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)
C21236 Quality of Life - Enjoyment trouble past week scale

The scale representing how often the participant had trouble enjoying things that they used to enjoy in the past 7 days, as part of Neuro-QOL Depression Adult Bank

 Supplemental Neuro-QOL Adult Bank - Depression True General (For all diseases) General (For all diseases)
C21132 Quality of Life - Movement zipper open close ability scale

The scale which represents the extent to which the participant was able to open and close a zipper, as part of Neuro-QOL Upper Extremity and Patient-Reported Outcomes Information Measurement System (PROMIS) Upper Extremity

 Supplemental Neuro-QOL Adult Bank - Upper Extremity True General (For all diseases) General (For all diseases)
C21214 Quality of Life - Trouble remembering new information past week scale

The scale representing how often the participant had trouble remembering new information, like phone numbers of simple instructions, 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)
C21320 Quality of Life - Movement bed chair ability scale

The scale which represents the extent to which the participant was able to get out of bed into a 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)
C21140 Quality of Life - Movement open prior open jar ability scale

The scale which represents the extent to which the participant was able to open previously opened jars, as part of Neuro-QOL Upper Extremity

 Supplemental Neuro-QOL Adult Bank - Upper Extremity True General (For all diseases) General (For all diseases)
C21222 Quality of Life - Trouble concentrate past week scale

The scale representing how often the participant had trouble concentrating 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)
C21328 Quality of Life - Movement low soft couch stand difficulty scale

The scale which represents the amount of difficulty the participant currently has in standing up from a low, soft couch, 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)
C20546 Quality of Life in Neurological Disorders (Neuro-Qol) - No energy fatigue asssessment past week scale

The scale representing how often the participant felt no energy 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)
C21230 Quality of Life - Clear telephone speech difficulty scale

The scale which represents the amount of difficulty the participant currently has in speaking clearly enough to use the telephone, as part of Neuro-QOL Communication

 Supplemental Neuro-QOL Adult Bank - Communication True General (For all diseases) General (For all diseases)
C21117 Subject name

Name of subject/participant

 Supplemental Participant/Subject Contact Information False General (For all diseases) General (For all diseases)
C18696 Imaging dimension other text

The free-text field related to 'Imaging dimension type' specifying other text. Type of imaging dimension used

 Supplemental Magnetic Resonance Imaging (MRI) False General (For all diseases) General (For all diseases)
C20771 Patient-Reported Outcome Measurement Information System (PROMIS) - Errand performance ability satisfaction past week scale

The scale which represents how often the participant's satisfaction with his/her ability to run errands 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)
C21167 Quality of Life - Hobby leisure activity limit complete past week scale

The scale representing how often the participant had to limit their hobbies or 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)
C58677 Gender identity type

Gender identity self-identified by the subject/participant. Gender type may or may not match sex assigned at birth

 Core Demographics False General (For all diseases) General (For all diseases)
C21271 Quality of Life - Family member activity level satisfaction past week scale

The scale which represents the extent to which the participant was satisfied with their current level of activity with family members 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)
C21175 Quality of Life - Community activity ability complete past week scale

The scale representing how often the participant was able to do all of the community activities that people expect 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)
C21252 Quality of Life - Satisfaction laugh humor recent assessment scale

The scale representing how often the participant could laugh and see the humor in situations 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)
C18740 Off study intervention prematurely other text

The free-text field related to 'Off study intervention prematurely reason' specifying other text. Primary reason participant/subject discontinued study intervention before planned end of study

 Supplemental Study Discontinuation/Completion False General (For all diseases) General (For all diseases)
C21279 Quality of Life - Work people disappointment self-assessment past week scale

The scale which represents the extent to which the participant felt that they were disappointing to other people at 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)
Displaying 26 - 50 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.