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 151 - 175 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
C20575 Quality of Life in Neurological Disorders (Neuro-Qol) - Usual activity help requirement fatigue assessment past week scale

The scale representing how often the participant needed help during usual activities because of weakness 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)
C20735 Quality of Life - Nothing interest assessment past week scale

The scale which represents how often the participant felt that nothing was interesting 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)
C21313 Quality of Life - Stigma illness blame self problem recent assessment scale

The scale representing how often the participant tended to blame himself/herself for their problems lately, as part of Neuro-QOL Stigma

 Supplemental Neuro-QOL Adult Bank - Stigma True General (For all diseases) General (For all diseases)
C21205 Quality of Life - Remember object location difficulty scale

The scale which represents the amount of difficulty the participant currently has in remembering where things were placed or put away (e.g., keys), as part of Neuro-QOL Cognitive Function

 Supplemental Neuro-QOL Adult Bank - Cognitive Function True General (For all diseases) General (For all diseases)
C21114 Visit post baseline day count

The number of days since baseline visit

 Supplemental Visit Schedule False General (For all diseases) General (For all diseases)
C21235 Quality of Life - Depression help need past week scale

The scale representing how often the participant felt like they needeed help for their depression 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)
C21131 Quality of Life - Movement pen pencil write ability scale

The scale which represents the extent to which the participant was able to write with a pen or pencil, as part of Neuro-QOL Upper Extremity and Patient-Reported Outcomes Measurement Information System (PROMIS)

 Supplemental Neuro-QOL Adult Bank - Upper Extremity True General (For all diseases) General (For all diseases)
C21213 Quality of Life - Task memory trouble past week scale

The scale representing how often the participant had trouble remembering whether they did things they were supposed to do, like taking a medicine or buying something they needed, 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)
C19256 Study protocol name

Name of study protocol

 Supplemental Serious Adverse Events False General (For all diseases) General (For all diseases)
C21319 Quality of Life - Movement in out car ability scale

The scale which represents the extent to which the participant was able to get in and out of the car, 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)
C21139 Quality of Life - Movement medication open difficulty scale

The scale which represents the amount of difficulty the participant currently has in opening medications or vitamin containers (e.g., childproof containers, small bottles) as part of Neuro-QOL Upper Extremity

 Supplemental Neuro-QOL Adult Bank - Upper Extremity True General (For all diseases) General (For all diseases)
C21221 Quality of Life - Attention difficulty past week scale

The scale representing how often the participant had to work really hard to pay attention or they would make a mistake 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)
C21327 Quality of Life - Movement bed sit lay down difficulty scale

The scale which represents the amount of difficulty the participant currently has in moving from sitting at the side of the bed to lying down on their back, 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)
C59689 COVID-19 vaccine or clinical vaccine trial status

Status related to whether the participant/subject has ever been given a coronavirus disease 2019 (COVID-19) vaccine or has enrolled in COVID-19 vaccine clinical trials

 Supplemental Medical History False General (For all diseases) General (For all diseases)
C21299 Quality of Life - Stigma illness unkind treatment recent assessment scale

The scale representing how often people were unkind to 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)
C20794 Quality of Life - Calmness difficulty assessment past week scale

The scale which represents how often the participant had difficulty calming down 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)
C20769 Patient-Reported Outcome Measurement Information System (PROMIS) - Dependability assistance ability satisfaction past week scale

The scale which represents the extent of the participant's satisfaction with his/her ability to meet the needs of those who depend on him 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)
C21166 Quality of Life - Regular leisure activity ability complete past week scale

The scale representing how often the participant was able to do all of their regular 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)
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)
C58676 Birth sex assigned type

Self-reported phenotypic sex of participant/subject, assigned at birth

 Core Demographics False General (For all diseases) General (For all diseases)
C21270 Quality of Life - Family need disappointment past week scale

The scale which represents the extent to which the participant was disappointed in their ability to meet the needs of their family 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)
C21174 Quality of Life - Participant leisure activity satisfactory complete past week scale

The scale representing how often the participant could do all of the leisure activities that they wanted 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)
C21251 Quality of Life - Satisfaction life purpose recent assesment scale

The scale representing how often the participant felt a sense of purpose in 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)
C21278 Quality of Life - Leisure activity limitation bother past week scale

The scale which represents the extent to which the participant was bothered by limitations in doing their hobbies or leisure 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)
C21182 Quality of Life - Good work ability complete past week scale

The scale representing how often the participant's ability to do their work was as good as it could be (include work at home) 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)
Displaying 151 - 175 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.