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.

Search Form

Show All
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 126 - 150 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
C56452 PROMIS - Pain Behavior when pain show on face scale

Scale related to the individual feeling as if when he/she was in pain it showed on his/her face (squinting eyes, opening eyes wide, frowning) 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)
C20744 Patient-Reported Outcome Measurement Information System (PROMIS) - Friendship 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 friends 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)
C21150 Quality of Life - Regular friend activity ability complete past week scale

The scale representing how often the participant was able to do all of their regular activities with 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)
C56500 Patient-Reported Outcome Measurement Information System (PROMIS) - Pain interference household chore ability scale

Scale which represents how often the participant felt pain interfered with ability to do household chores over the past seven days, as a 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)
C21291 Quality of Life - Cancel friend activity bad sleep past week scale

The scale representing how often the participant avoided or cancelled activities with their friends because they were tired from having a bad night's sleep 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)
C20781 Quality of Life - Worry assessment past week scale

The scale which represents how often the participant felt worried 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)
C56460 PROMIS - Pain Behavior when pain use cane for support scale

Scale related to the individual feeling as if when in pain he/she used a cane or something else for support 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)
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 Neuro-QOL Adult Bank - Satisfaction with SRA True General (For all diseases) General (For all diseases)
C21158 Quality of Life - Family activity want complete past week scale

The scale representing how often the participant was able to do all of the family activities that they wanted 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)
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)
C56508 Patient-Reported Outcome Measurement Information System (PROMIS) - Pain Interference pain make discourage scale

Scale related to how often pain made an individual feel discouraged 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)
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)
C56468 PROMIS - Pain Behavior when pain moan whine whimper scale

Scale related to the individual feeling as if when in pain he/she moaned, whined, or whimpered 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)
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)
C20765 Patient-Reported Outcome Measurement Information System (PROMIS) - Household responsibity regular person ability satisfaction past week scale

The scale which represents the extent of the participant's satisfaction with his/her ability to do regular personal and household responsibilities 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)
C21245 Quality of Life - Satisfaction life significance recent assessment scale

The scale representing how often the participant felt their life had meaning 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)
C20560 Quality of Life in Neurological Disorders (Neuro-Qol) - Sleep need during day past week scale

The scale representing how often the participant needed to sleep 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)
C20704 Quality of Life - Loneliness assessment past week scale

The scale which represents how often the participant felt lonely 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)
C56515 Patient-Reported Outcome Measurement Information System (PROMIS) - Pain Interference pain prevent sit 30 minute more scale

Scale related to how often pain prevented an individual from sitting for more than 30 minutes 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)
C21306 Quality of Life - Stigma illness unfair treatment recent assessment scale

The scale representing how often the participant was treated unfairly by 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)
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)
C20411 Serious adverse event outcome status other text

Free-text field to specify an alternate outcome attributed to the serious adverse event

 Supplemental Serious Adverse Events False 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)
Displaying 126 - 150 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.