NeuroRehab

Data Standards

Organized by domains and subdomains often used in clinical studies, data standards include:

  • CDEs — Classified as NeuroRehab Core, NeuroRehab [Disease] Core, or NeuroRehab Supplemental–Highly Recommended (NeuroRehab Classification Definitions)
  • CRF Modules — Template forms that logically organize CDEs for data collection
  • Guidance Documents — Provide further information about the CDEs
  • Instrument Notice of Copyright (NOC) Documents — Include pertinent information on recommended instruments (Instrument Notice of Copyright Information)

NeuroRehab Start-up Resource Listing: All Core and Supplemental–Highly Recommended CDEs recommended for NeuroRehab study start-up

NeuroRehab Highlight Summary: Overview of all NeuroRehab-specific CDE recommendations as they appear on the website

Click Expand All to view the CDEs associated with the CRF modules, organized by domain and subdomain.

In the Form Search below, select a Subdisease for your NeuroRehab study to view the CDEs for those types of studies.

The default setting for Subdisease is ‘Any’ and will return results for all Subdiseases.

NeuroRehab Comprehensive includes all CDE recommendations.

NeuroRehab General includes all CDE recommendations that are not disease specific.

All other Subdiseases include recommendations specific to existing NINDS CDE project disorders.

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NIH Resources
NIH Resources
CRF Module/Guidance CDEs
National Institutes of Health (NIH) Toolbox N/A
Patient-Reported Outcomes Measurement Information System (PROMIS) N/A
Patient-Reported Outcomes Measurement Information System (PROMIS) N/A
Quality of Life in Neurological Disorders (Neuro-QOL) N/A
National Institutes of Health (NIH) Toolbox N/A
Patient-Reported Outcomes Measurement Information System (PROMIS) N/A
Quality of Life in Neurological Disorders (Neuro-QOL) N/A
Overview of Working Group Recommendations
Summary Documents
CRF Module/Guidance CDEs
Assessments and Examinations Subgroup Summary N/A
Assessments and Examinations Subgroup Summary N/A
Assessments and Examinations Subgroup Summary N/A
Assessments and Examinations Subgroup Summary N/A
Assessments and Examinations Subgroup Summary N/A
Assessments and Examinations Subgroup Summary N/A
Assessments and Examinations Subgroup Summary N/A
Assessments and Examinations Subgroup Summary N/A
Communication Subgroup Summary N/A
Communication Subgroup Summary N/A
Communication Subgroup Summary N/A
Communication Subgroup Summary N/A
Communication Subgroup Summary N/A
Communication Subgroup Summary N/A
Communication Subgroup Summary N/A
Communication Subgroup Summary N/A
Comorbid and Behavioral Conditions Subgroup Summary N/A
Comorbid and Behavioral Conditions Subgroup Summary N/A
Quality of Life Subgroup Summary N/A
Quality of Life Subgroup Summary N/A
Quality of Life Subgroup Summary N/A
Quality of Life Subgroup Summary N/A
Quality of Life Subgroup Summary N/A
Quality of Life Subgroup Summary N/A
Quality of Life Subgroup Summary N/A
Quality of Life Subgroup Summary N/A
Quality of Life Subgroup Summary N/A
Quality of Life Subgroup Summary N/A
Assessments and Examinations Subgroup Summary N/A
Assessments and Examinations Subgroup Summary N/A
Assessments and Examinations Subgroup Summary N/A
Assessments and Examinations Subgroup Summary N/A
Comorbid and Behavioral Conditions Subgroup Summary N/A
Comorbid and Behavioral Conditions Subgroup Summary N/A
Comorbid and Behavioral Conditions Subgroup Summary N/A
Motor Function Subgroup Summary N/A
Motor Function Subgroup Summary N/A
Treatment/Intervention Data: Devices Subgroup Summary N/A
Treatment/Intervention Data: Devices Subgroup Summary N/A
Treatment/Intervention Data: Therapies Subgroup Summary N/A
Treatment/Intervention Data: Therapies Subgroup Summary N/A
Cognitive Subgroup Summary N/A
Cognitive Subgroup Summary N/A
Communication Subgroup Summary N/A
Communication Subgroup Summary N/A
Communication Subgroup Summary N/A
Emotion Behavior Neuropsychology Subgroup Summary N/A
Emotion Behavior Neuropsychology Subgroup Summary N/A
Activities of Daily Living Subgroup Summary N/A
Activities of Daily Living Subgroup Summary N/A
Quality of Life Subgroup Summary N/A
Quality of Life Subgroup Summary N/A
Participation Subgroup Summary N/A
Participation Subgroup Summary N/A
Infant Pediatrics Subgroup Summary N/A
Infant Pediatrics Subgroup Summary N/A
Participant Characteristics
Demographics
CRF Module/Guidance CDEs
General Core CDE Details
Infant Pediatrics Demographics CDE Details
Infant Pediatrics Demographics CDE Details
General Core CDE Details
Assessments and Examinations
Autonomic
CRF Module/Guidance CDEs
Composite Autonomic Symptom Scale (COMPASS-31) N/A
Composite Autonomic Symptom Scale (COMPASS-31) N/A
Comorbidities
CRF Module/Guidance CDEs
Boston Naming Test (BNT) - 30-item version N/A
Boston Naming Test (BNT) - 30-item version N/A
Boston Naming Test (BNT) - 30-item version N/A
PROMIS Item Bank v1.0 - Alcohol: Negative Consequences CDE Details
PROMIS Item Bank v1.0 - Alcohol: Negative Consequences CDE Details
PROMIS Item Bank v1.0 - Alcohol: Negative Consequences CDE Details
PROMIS Item Bank v1.0 - Dyspnea Functional Limitations CDE Details
PROMIS Item Bank v1.0 - Dyspnea Functional Limitations CDE Details
PROMIS Item Bank v1.0 - Dyspnea Functional Limitations CDE Details
General and Motor
CRF Module/Guidance CDEs
Assessments and Examinations Demographic and Clinical Conditions CDE Details
Assessments and Examinations Demographic and Clinical Conditions CDE Details
Fugl-Meyer Assessment N/A
Fugl-Meyer Assessment N/A
Functional Gait Assessment CDE Details
Functional Gait Assessment CDE Details
Functional Gait Assessment CDE Details
Other Clinical Data
CRF Module/Guidance CDEs
Brief Symptom Inventory-18 (BSI-18) CDE Details
Brief Symptom Inventory-18 (BSI-18) CDE Details
Brief Symptom Inventory-18 (BSI-18) CDE Details
Immediate Post-Concussion Assessment and Cognitive Testing (imPACT) CDE Details
Immediate Post-Concussion Assessment and Cognitive Testing (imPACT) CDE Details
Immediate Post-Concussion Assessment and Cognitive Testing (imPACT) CDE Details
Immediate Post-Concussion Assessment and Cognitive Testing (imPACT) CDE Details
Immediate Post-Concussion Assessment and Cognitive Testing (imPACT) CDE Details
Patient-Reported Outcomes Measurement Information System (PROMIS) N/A
Patient-Reported Outcomes Measurement Information System (PROMIS) N/A
Patient-Reported Outcomes Measurement Information System (PROMIS) N/A
Post Concussion Symptom Scale CDE Details
Post Concussion Symptom Scale CDE Details
Post Concussion Symptom Scale CDE Details
Post Concussion Symptom Scale CDE Details
Post Concussion Symptom Scale CDE Details
Rivermead Post-Concussive Symptoms Questionnaire (RPQ) CDE Details
Rivermead Post-Concussive Symptoms Questionnaire (RPQ) CDE Details
Rivermead Post-Concussive Symptoms Questionnaire (RPQ) CDE Details
Rivermead Post-Concussive Symptoms Questionnaire (RPQ) CDE Details
Rivermead Post-Concussive Symptoms Questionnaire (RPQ) CDE Details
Rivermead Post-Concussive Symptoms Questionnaire (RPQ) CDE Details
Rivermead Post-Concussive Symptoms Questionnaire (RPQ) CDE Details
Physical/Neurological Examination
CRF Module/Guidance CDEs
Glasgow Coma Scale (GCS) CDE Details
Glasgow Coma Scale (GCS) CDE Details
NIH Stroke Scale (NIHSS) CDE Details
NIH Stroke Scale (NIHSS) CDE Details
Treatment/Intervention Data
Devices
CRF Module/Guidance CDEs
Devices: Communication CDE Details
Devices: Communication CDE Details
Devices: Mobility and Manipulation CDE Details
Devices: Mobility and Manipulation CDE Details
Outcomes and End Points
Academic/Intellectual Functioning
CRF Module/Guidance CDEs
Test of Premorbid Functioning CDE Details
Test of Premorbid Functioning CDE Details
Wechsler Adult Intelligence Scale - Fourth Edition (WAIS-IV) CDE Details
Wechsler Adult Intelligence Scale - Fourth Edition (WAIS-IV) CDE Details
Word Reading Subtest of the Wide Range Achievement Test (WRAT-4) CDE Details
Word Reading Subtest of the Wide Range Achievement Test (WRAT-4) CDE Details
Activities of Daily Living/Performance
CRF Module/Guidance CDEs
Barthel Index N/A
Barthel Index N/A
Functional Independence Measure (FIM) N/A
Functional Independence Measure (FIM) N/A
Amnesia/Coma
CRF Module/Guidance CDEs
Galveston Orientation and Amnesia Test (GOAT) CDE Details
Galveston Orientation and Amnesia Test (GOAT) CDE Details
JFK Coma Recovery Scale- Revised CDE Details
JFK Coma Recovery Scale- Revised CDE Details
Attention/Working Memory
CRF Module/Guidance CDEs
Letter-Number Sequencing Subtest N/A
Letter-Number Sequencing Subtest N/A
NIH Toolbox Flanker Inhibitory Control and Attention Test N/A
NIH Toolbox Flanker Inhibitory Control and Attention Test N/A
Wechsler Adult Intelligence Scale-Fourth Edition (WAIS-IV) - Digit Span Subtest N/A
Wechsler Adult Intelligence Scale-Fourth Edition (WAIS-IV) - Digit Span Subtest N/A
Behavioral Function
CRF Module/Guidance CDEs
Alcohol Use Disorders Identification Test: Self-Report Version (AUDIT) CDE Details
Alcohol Use Disorders Identification Test: Self-Report Version (AUDIT) CDE Details
Frontal Behavioral Inventory (FBI) CDE Details
Frontal Behavioral Inventory (FBI) CDE Details
Frontal Systems Behavioral Scale (FrSBe) CDE Details
Frontal Systems Behavioral Scale (FrSBe) CDE Details
Cognitive Activity Limitations
CRF Module/Guidance CDEs
Functional Independence Measure - Cognition Subscale (Cog-FIM) N/A
Functional Independence Measure - Cognition Subscale (Cog-FIM) N/A
PROMIS Item Bank v2.0 - Cognitive Function N/A
PROMIS Item Bank v2.0 - Cognitive Function N/A
PROMIS Item Bank v2.0 - Cognitive Function Abilities Subset N/A
PROMIS Item Bank v2.0 - Cognitive Function Abilities Subset N/A
Cognitive Assessment
CRF Module/Guidance CDEs
Brief Test of Adult Cognition by Telephone (BTACT) CDE Details
Brief Test of Adult Cognition by Telephone (BTACT) CDE Details
NIH Toolbox Cognitive Battery CDE Details
NIH Toolbox Cognitive Battery CDE Details
Repeatable Battery for Assessment of Neuropsychological Status (RBANS) CDE Details
Repeatable Battery for Assessment of Neuropsychological Status (RBANS) CDE Details
Communication
CRF Module/Guidance CDEs
Stroke and Aphasia Quality of Life-39 (SAQOL-39) N/A
Stroke and Aphasia Quality of Life-39 (SAQOL-39) N/A
Disease-Specific Health-Related Quality of Life
CRF Module/Guidance CDEs
HDQLIFE N/A
HDQLIFE N/A
Headache Impact Test-6 (HIT-6) N/A
Headache Impact Test-6 (HIT-6) N/A
Myotonic Dystrophy Health Index (MDHI) N/A
Myotonic Dystrophy Health Index (MDHI) N/A
Parkinson's Disease Quality of Life Scale (PDQUALIF) CDE Details
Parkinson's Disease Quality of Life Scale (PDQUALIF) CDE Details
Spinal Cord Injury - Quality of Life (SCI-QOL) N/A
Spinal Cord Injury - Quality of Life (SCI-QOL) N/A
Traumatic Brain Injury - Quality of Life (TBI-QOL) CDE Details
Traumatic Brain Injury - Quality of Life (TBI-QOL) CDE Details
Traumatic Brain Injury - Quality of Life (TBI-QOL) CDE Details
Traumatic Brain Injury - Quality of Life (TBI-QOL) CDE Details
Traumatic Brain Injury - Quality of Life (TBI-QOL) CDE Details
Traumatic Brain Injury - Quality of Life (TBI-QOL) CDE Details
Dysphagia
CRF Module/Guidance CDEs
Huntington's Disease Dysphagia Scale N/A
Huntington's Disease Dysphagia Scale N/A
Quality of Life in Swallowing Disorders (SWAL-QOL) CDE Details
Quality of Life in Swallowing Disorders (SWAL-QOL) CDE Details
Swallowing Disturbance Questionnaire (SDQ) CDE Details
Swallowing Disturbance Questionnaire (SDQ) CDE Details
Emotional and Cognitive Status
CRF Module/Guidance CDEs
PROMIS Item Bank v1.0 - Self-Efficacy for Managing Emotions CDE Details
PROMIS Item Bank v1.0 - Self-Efficacy for Managing Emotions CDE Details
Emotional Impairment
CRF Module/Guidance CDEs
Apathy Evaluation Scale N/A
Apathy Evaluation Scale N/A
Beck Anxiety Inventory (BAI) CDE Details
Beck Anxiety Inventory (BAI) CDE Details
Beck Depression Inventory II (BDI-II) CDE Details
Beck Depression Inventory II (BDI-II) CDE Details
Emotional/Behavioral
CRF Module/Guidance CDEs
NIH Toolbox Emotional Battery N/A
NIH Toolbox Emotional Battery N/A
PROMIS Item Bank v1.0 - Emotional Distress - Anxiety CDE Details
PROMIS Item Bank v1.0 - Emotional Distress - Anxiety CDE Details
PROMIS Item Bank v1.0 - Emotional Distress - Depression (Calibrated Items) CDE Details
PROMIS Item Bank v1.0 - Emotional Distress - Depression (Calibrated Items) CDE Details
Executive Functioning
CRF Module/Guidance CDEs
Five-Point Test (5-PT) N/A
Five-Point Test (5-PT) N/A
Stroop Test CDE Details
Stroop Test CDE Details
Eye Hand Motor
CRF Module/Guidance CDEs
Grooved Pegboard Test CDE Details
Grooved Pegboard Test CDE Details
Functional Outcomes
CRF Module/Guidance CDEs
10 Meter Timed Walk N/A
10 Meter Timed Walk N/A
Box and Blocks Test of Manual Dexterity N/A
Box and Blocks Test of Manual Dexterity N/A
Timed Up and Go (TUG) N/A
Timed Up and Go (TUG) N/A
Generic Health-Related Quality of Life
CRF Module/Guidance CDEs
PROMIS-29 Profile N/A
PROMIS-29 Profile N/A
Short Form 36-Item Health Survey (SF-36) CDE Details
Short Form 36-Item Health Survey (SF-36) CDE Details
World Health Organization Quality of Life Assessment (WHOQOL-BREF) CDE Details
World Health Organization Quality of Life Assessment (WHOQOL-BREF) CDE Details
Global Health-Related Quality of Life Outcome
CRF Module/Guidance CDEs
PROMIS Item Bank v1.2 - Global Health CDE Details
PROMIS Item Bank v1.2 - Global Health CDE Details
Quality of Life in Neurological Disorders (Neuro-QOL) N/A
Quality of Life in Neurological Disorders (Neuro-QOL) N/A
Instrumental Activities of Daily Living
CRF Module/Guidance CDEs
Assessment of Life Habits (Life-H) N/A
Assessment of Life Habits (Life-H) N/A
Language
CRF Module/Guidance CDEs
Animal Naming N/A
Animal Naming N/A
Controlled Oral Word Association Test (COWAT) Subtest of the Multilingual Aphasia Examination (MAE) CDE Details
Controlled Oral Word Association Test (COWAT) Subtest of the Multilingual Aphasia Examination (MAE) CDE Details
Token Test N/A
Token Test N/A
Western Aphasia Battery Revised N/A
Western Aphasia Battery Revised N/A
Memory
CRF Module/Guidance CDEs
Brief Visuospatial Memory Test Revised (BVMT-R) CDE Details
Brief Visuospatial Memory Test Revised (BVMT-R) CDE Details
Hopkins Verbal Learning Test - Revised (HVLT-R) CDE Details
Hopkins Verbal Learning Test - Revised (HVLT-R) CDE Details
Rey Auditory Verbal Learning Test (RAVLT) CDE Details
Rey Auditory Verbal Learning Test (RAVLT) CDE Details
Mood/Anxiety
CRF Module/Guidance CDEs
Generalized Anxiety Disorder (GAD-7) CDE Details
Generalized Anxiety Disorder (GAD-7) CDE Details
Hospital Anxiety and Depression Scale (HADS) N/A
Hospital Anxiety and Depression Scale (HADS) N/A
Patient Health Questionnaire - 9 (PHQ-9) Depression Scale CDE Details
Patient Health Questionnaire - 9 (PHQ-9) Depression Scale CDE Details
Pain
CRF Module/Guidance CDEs
Brief Pain Inventory (Short Form) CDE Details
Brief Pain Inventory (Short Form) CDE Details
PROMIS Item Bank v1.1 - Pain Interference CDE Details
PROMIS Item Bank v1.1 - Pain Interference CDE Details
PROMIS Item Bank v1.1 - Pain Interference CDE Details
PROMIS Item Bank v2.0 - Pain Behavior N/A
PROMIS Item Bank v2.0 - Pain Behavior N/A
PROMIS Item Bank v2.0 - Pain Behavior N/A
Participation
CRF Module/Guidance CDEs
PROMIS v2.0 - Ability to Participate in Social Roles and Activities N/A
PROMIS v2.0 - Ability to Participate in Social Roles and Activities N/A
PROMIS v2.0 - Satisfaction with Social Roles and Activities N/A
PROMIS v2.0 - Satisfaction with Social Roles and Activities N/A
Pediatric
CRF Module/Guidance CDEs
Pediatric Quality of Life Inventory (PedsQL) CDE Details
Pediatric Quality of Life Inventory (PedsQL) CDE Details
Strengths and Difficulties Questionnaire (SDQ), combined Full and Followup versions CDE Details
Strengths and Difficulties Questionnaire (SDQ), combined Full and Followup versions CDE Details
Performance Validity Tests
CRF Module/Guidance CDEs
Medical Symptom Validity Test (MSVT) CDE Details
Medical Symptom Validity Test (MSVT) CDE Details
Test of Memory Malingering (TOMM) N/A
Test of Memory Malingering (TOMM) N/A
Victoria Symptom Validity Test (VSVT) CDE Details
Victoria Symptom Validity Test (VSVT) CDE Details
Physical Function
CRF Module/Guidance CDEs
2 Minute Walk Test N/A
2 Minute Walk Test N/A
6 Minute Walk Test N/A
6 Minute Walk Test N/A
Borg Rating of Perceived Exertion (RPE) Scale N/A
Borg Rating of Perceived Exertion (RPE) Scale N/A
Processing Speed
CRF Module/Guidance CDEs
Processing Speed Index of the Wechsler Adult Intelligence Scale-Fourth Edition (WAIS-IV) CDE Details
Processing Speed Index of the Wechsler Adult Intelligence Scale-Fourth Edition (WAIS-IV) CDE Details
Symbol Digit Modalities Test CDE Details
Symbol Digit Modalities Test CDE Details
Trail Making Test N/A
Trail Making Test N/A
Psychiatric and Psychological Functions
CRF Module/Guidance CDEs
Apathy Scale (AS) CDE Details
Apathy Scale (AS) CDE Details
Columbia - Suicide Severity Rating Scale (C-SSRS) N/A
Columbia - Suicide Severity Rating Scale (C-SSRS) N/A
Impact of Event Scale (IES) N/A
Impact of Event Scale (IES) N/A
Psychiatric and Psychological Status
CRF Module/Guidance CDEs
Alcohol, Smoking, and Substance Use Involvement Screening Test (ASSIST) CDE Details
Alcohol, Smoking, and Substance Use Involvement Screening Test (ASSIST) CDE Details
PTSD Checklist for DSM-5 (PCL-5) N/A
PTSD Checklist for DSM-5 (PCL-5) N/A
Structured Clinical Interview for DSM-5 Axis I Disorders Research Version (SCID-5-RV) N/A
Structured Clinical Interview for DSM-5 Axis I Disorders Research Version (SCID-5-RV) N/A
Psychological Status
CRF Module/Guidance CDEs
Center for Epidemiologic Studies-Depression Scale (CES-D) CDE Details
Center for Epidemiologic Studies-Depression Scale (CES-D) CDE Details
Hamilton Anxiety Rating Scale (HAM-A) CDE Details
Hamilton Anxiety Rating Scale (HAM-A) CDE Details
Hamilton Depression Rating Scale (HDRS) CDE Details
Hamilton Depression Rating Scale (HDRS) CDE Details
Screening
CRF Module/Guidance CDEs
Mini-Mental State Examination (MMSE) N/A
Mini-Mental State Examination (MMSE) N/A
Montreal Cognitive Assessment (MoCA) N/A
Montreal Cognitive Assessment (MoCA) N/A
Telephone Interview for Cognitive Status (TICS) N/A
Telephone Interview for Cognitive Status (TICS) N/A
Sleep
CRF Module/Guidance CDEs
Neuro-QOL Adult Bank - Sleep Disturbance CDE Details
Neuro-QOL Adult Bank - Sleep Disturbance CDE Details
Neuro-QOL Adult Bank - Sleep Disturbance CDE Details
PROMIS Item Bank v1.0 - Sleep Disturbance CDE Details
PROMIS Item Bank v1.0 - Sleep Disturbance CDE Details
PROMIS Item Bank v1.0 - Sleep Disturbance CDE Details
PROMIS Item Bank v1.0 - Sleep Related Impairment CDE Details
PROMIS Item Bank v1.0 - Sleep Related Impairment CDE Details
PROMIS Item Bank v1.0 - Sleep Related Impairment CDE Details
Speech
CRF Module/Guidance CDEs
Acoustic Analysis of Speech N/A
Acoustic Analysis of Speech N/A
Voice Handicap Index (VHI) N/A
Voice Handicap Index (VHI) N/A
Voice Handicap Index (VHI) N/A
Voice Handicap Index (VHI) N/A
Voice Handicap Index (VHI) N/A
Voice Handicap Index (VHI) N/A
Trunk Control/Balance
CRF Module/Guidance CDEs
Activities Specific Balance Confidence Scale (ABC-Scale) CDE Details
Activities Specific Balance Confidence Scale (ABC-Scale) CDE Details
Berg Balance Scale (BBS) CDE Details
Berg Balance Scale (BBS) CDE Details
Mini-Balance Evaluation Systems Test (Mini-BESTest) N/A
Mini-Balance Evaluation Systems Test (Mini-BESTest) N/A
Visual
CRF Module/Guidance CDEs
Judgment of Line Orientation (Benton JLO) N/A
Judgment of Line Orientation (Benton JLO) N/A
Rey-Osterrieth Complex Figure Test (ROCF) N/A
Rey-Osterrieth Complex Figure Test (ROCF) N/A

For more CDEs on the following disorders, please visit the appropriate page using the links below or the Disorders menu at the top of this page.
Congenital Muscular Dystrophy
Epilepsy
Friedreich's ataxia
Headache
Huntington’s Disease
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Myotonic Muscular Dystrophy
Parkinson’s Disease
Spinal Cord Injury
Sport Related Concussion
Stroke
Traumatic Brain Injury

Prospective Assessments for Suicidal Ideation and Behavior

Investigators should review the FDA’s "Guidance for Industry: Suicidal Ideation and Behavior: Prospective Assessment of Occurrence in Clinical Trials” for the most up-to-date information about suicidal ideation and behavior. One scale that FDA suggests is the Columbia Suicide Severity Rating Scale (C-SSRS) (available at https://cssrs.columbia.edu/).

Instrument Notice of Copyright Information

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/Guidance’ 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.

Overview

The National Institute of Neurological Disorders and Stroke (NINDS), in partnership with the National Center for Medical Rehabilitation Research (NCMRR) of the National Institute of Child Health and Human Development (NICHD) formed the Common Data Elements for Rehabilitation Research in Neurological Disorders (NeuroRehab) Working Group (WG) in 2020. Chairs were appointed to lead the overall WG and the twelve domain-specific subgroups: Assessments and Examinations; Comorbid and Behavioral Conditions; Motor Function; Treatment/Intervention Data: Devices; Treatment/Intervention Data: Therapies; Cognitive; Communication; Emotion Behavior Neuropsychology; Activities of Daily Living; Quality of Life; Participation; Infant Pediatrics. Subgroups met from October 2020 to July 2021 to develop their recommendations. See the roster for list of members by subgroup.

Neurorehabilitation (i.e., neurological rehabilitation) refers to a supervised program by an interdisciplinary team of health professionals (e.g., physiatrists, neuropsychologists, physical therapists) that is designed for individuals with diseases, trauma, or disorders of the nervous system. Neurorehabilitation can often improve function, reduce symptoms, and improve the well-being/health-related quality of life of individuals through active and dynamic processes and therapies. (Adapted from Johns Hopkins Medicine, 2021. Neurological Rehabilitation. Accessed 22Feb2021 from https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/neu....)

The goal of the NeuroRehab v1.0 CDE project is to create a centralized resource of existing NINDS CDEs for neurorehabilitation researchers and determine areas for future development.

This project aligns with the existing NINDS CDE subdomain framework with some harmonization of subdomains. The working group focused their review on existing NINDS CDE recommendations to determine what is relevant to neurorehabilitation research. During the initial phase of the project, additional existing CDEs from other NIH-supported CDE efforts were also reviewed.

Additionally, v1.0 was limited to those instruments and CDE recommendations considered essential for all NeuroRehab studies (NeuroRehab Core), essential for disease-specific NeuroRehab studies (NeuroRehab [Disease] Core) or essential based on certain conditions or study types in NeuroRehab research (NeuroRehab Supplemental - Highly Recommended). Core CDEs for studies in infant and pediatric populations were also identified.

During the review, subgroups identified gap areas for their domains in the existing NINDS/NIH CDEs. These gap areas include new instruments, CDEs and subdomains, as well as Supplemental or Exploratory recommendations. For some subgroups, the existing NINDS/NIH CDEs relevant to their purview were limited. Identified gap areas will inform the direction of future work.

Roster

Members of the NeuroRehab CDE Working Group by subgroup, current members of the Steering Committee and the NINDS/NICHD CDE Team are listed below.

Please see the Overview tab for additional project background and timeline information.

Complete NeuroRehab CDE Roster

Oversight Committee

Oversight Committee

  • Noelle Carlozzi, PhD
    University of Michigan Medical School, Ann Arbor, Michigan
    Co-Chair
  • Allen Heinemann, PhD
    Northwestern University, Shirley Ryan AbilityLab, Chicago, Illinois
    Co-Chair
  • Deborah Backus, PT, PhD
    Shepherd Center, Atlanta, Georgia
  • Carolyn Baum, PhD, OTR
    Washington University in St. Louis, St. Louis, Missouri
  • Lisa Brenner, PhD
    Veterans Affairs Rocky Mountain Mental Illness Research Education and Clinical Center, Denver, Colorado
  • Leslie Freeman Davidson, PhD, OT/L
    The George Washington University, School of Medicine and Health Sciences, Washington, District of Columbia
  • Anne Deutsch, RN, PhD
    Rehabilitation Institute of Chicago, Chicago, Illinois
  • Kimberly Frey, PhD, CCC-SLP, CBIS
    Craig Hospital, Englewood, Colorado
  • Shannon Juengst, PhD, CRC
    University of Texas Southwestern Medical Center, Dallas, Texas
  • Claire Kalpakjian, PhD, MS
    University of Michigan, Ann Arbor, Michigan
  • Allan Kozlowski, PhD
    Mary Free Bed Rehabilitation Hospital, Grand Rapids, Michigan
  • Catherine Lang, PT, PhD
    Washington University in St. Louis, St. Louis, Missouri
  • Adam Politis, MS, CCC-SLP
    National Institutes of Health Clinical Center, Bethesda, Maryland
  • Sharon Ramey, PhD
    Fralin Biomedical Research Institute at Virginia Tech Carilion, Roanoke, Virginia
  • Angelle Sander, PhD
    Baylor College of Medicine and TIRR Memorial Hermann, Houston, Texas
  • Heidi Schambra, MD
    NYU Langone Health and NYU Grossman School of Medicine, New York, New York
  • Marcia Scherer, PhD, MPH, FACRM
    Institute for Matching Person and Technology, Webster, New York
  • Beth Slomine, PhD
    Kennedy Krieger Institute, Baltimore, Maryland
  • Steven Wolf, PhD, PT, FAPTA, FAHA
    Emory University, Atlanta, Georgia

Steering Committee Members

Steering Committee Members

  • Noelle Carlozzi, PhD
    University of Michigan Medical School, Ann Arbor, Michigan
    Co-Chair
  • Allen Heinemann, PhD
    Northwestern University, Shirley Ryan AbilityLab, Chicago, Illinois
    Co-Chair
  • Carolyn Baum, PhD, OTR
    Washington University in St. Louis, St. Louis, Missouri
  • Jonathan Bean, MD, MS, MPH
    Harvard Medical School, Boston, Massachusetts
  • Steven Cramer, MD
    University of California Los Angeles and California Rehabilitation Institute, Los Angeles, California
  • Anne Deutsch, RN, PhD
    Rehabilitation Institute of Chicago, Chicago, Illinois
  • Kimberly Frey, PhD, CCC-SLP, CBIS
    Craig Hospital, Englewood, Colorado
  • James Graham, PhD, DC
    Colorado State University, Fort Collins, Colorado
  • Robert Heaton, PhD
    University of California San Diego, San Diego, California
  • Shannon Juengst, PhD, CRC
    University of Texas Southwestern Medical Center, Dallas, Texas
  • Claire Kalpakjian, PhD, MS
    University of Michigan, Ann Arbor, Michigan
  • Allan Kozlowski, PhD
    Mary Free Bed Rehabilitation Hospital, Grand Rapids, Michigan
  • Catherine Lang, PT, PhD
    Washington University in St. Louis, St. Louis, Missouri
  • Jonathan Pearlman, PhD
    University of Pittsburgh, Pittsburgh, Pennsylvania
  • Adam Politis, MS, CCC-SLP
    National Institutes of Health Clinical Center, Bethesda, Maryland
  • Sharon Ramey, PhD
    Fralin Biomedical Research Institute at Virginia Tech Carilion, Roanoke, Virginia
  • Elizabeth Rasch, PT, PhD
    National Institutes of Health Clinical Center, Bethesda, Maryland
  • Angelle Sander, PhD
    Baylor College of Medicine and TIRR Memorial Hermann, Houston, Texas
  • Heidi Schambra, MD
    NYU Langone Health and NYU Grossman School of Medicine, New York, New York
  • Marcia Scherer, PhD, MPH, FACRM
    Institute for Matching Person and Technology, Webster, New York
  • Beth Slomine, PhD
    Kennedy Krieger Institute, Baltimore, Maryland
  • Elizabeth Twamley, PhD
    University of California San Diego, San Diego, California
  • Steven Wolf, PhD, PT, FAPTA, FAHA
    Emory University, Atlanta, Georgia

Activities of Daily Living

Activities of Daily Living

  • Carolyn Baum, PhD, OTR
    Washington University in St. Louis, St. Louis, Missouri
    Co-Chair
  • Jonathan Bean, MD, MS, MPH
    Harvard Medical School, Boston, Massachusetts
    Co-Chair
  • Lauren Terhorst, PhD
    University of Pittsburgh, Pittsburgh, Pennsylvania
  • Jennifer Weaver, PhD, OTR/L
    The George Washington University, Washington, District of Columbia
  • Alex Wong, PhD, DPhil
    Washington University in St. Louis, St. Louis, Missouri

Assessments and Examinations

Assessments and Examinations

  • Steven Cramer, MD
    University of California Los Angeles and California Rehabilitation Institute, Los Angeles, California
    Co-Chair
  • Heidi Schambra, MD
    NYU Langone Health and NYU Grossman School of Medicine, New York, New York
    Co-Chair
  • Angela Colantonio, PhD, OT
    University of Toronto, Toronto, Ontario, Canada
  • Daniel Corcos, PhD
    Northwestern University, Chicago, Illinois
  • Peter Esselman, MD
    University of Washington, Seattle, Washington
  • Gerard Francisco, MD
    University of Texas Health Science Center, Houston, Texas
  • Douglas Katz, MD
    Boston University School of Medicine, Boston, Massachusetts
  • Laurie King, PhD, PT, MCR
    Oregon Health and Science University, Portland, Oregon
  • Christina Marciniak, MD
    Northwestern University, Chicago, Illinois
  • Elliot Roth, MD
    Northwestern University, Chicago, Illinois

Comorbid and Behavioral Conditions

Comorbid and Behavioral Conditions

  • Deborah Backus, PT, PhD
    Shepherd Center, Atlanta, Georgia
    Chair
  • Robert Motl, PhD
    University of Alabama at Birmingham, Birmingham, Alabama
  • Risa Nakase-Richardson, PhD
    James A. Haley Veterans Hospital & University of South Florida, Tampa, Florida

Cognitive

Cognitive

  • Robert Heaton, PhD
    University of California San Diego, San Diego, California
    Co-Chair
  • Elizabeth Twamley, PhD
    University of California San Diego, San Diego, California
    Co-Chair
  • Jennifer Bogner, PhD
    The Ohio State University - Wexner Medical Center, Columbus, Ohio
  • Kaitlin Blackstone Casaletto, PhD
    University of California San Francisco, San Francisco, California
  • Leslie Freeman Davidson, PhD
    The George Washington University, School of Medicine and Health Sciences, Washington, District of Columbia
  • Yael Goverover, PhD
    New York University, New York, New York
  • Jordan Grafman, PhD
    Shirley Ryan AbilityLab, Chicago, Illinois
  • Robin Hanks, PhD, ABPP-ABCN
    Wayne State University School of Medicine, Detroit, Michigan
  • James Holdnack, PhD
    National Institute of Nursing Research, National Institutes of Health, Bethesda, Maryland
  • Joseph Ricker, PhD
    NYU Langone, New York University School of Medicine, New York, New York
  • Noah Silverberg, PhD
    The University of British Columbia, Vancouver, British Columbia
  • Erica Weber, PhD
    Kessler Foundation, East Hanover/West Orange, New Jersey

Communication

Communication

  • Kimberly Frey, PhD, CCC-SLP, CBIS
    Craig Hospital, Englewood, Colorado
    Co-Chair
  • Adam Politis, MS, CCC-SLP
    National Institutes of Health Clinical Center, Bethesda, Maryland
    Co-Chair
  • Julie Barkmeier-Kraemer, PhD, CCC-SLP
    University of Utah, Salt Lake City, Utah
  • Margaret Lehman Blake, PhD, CCC-SLP
    University of Houston, Houston, Texas
  • Carmen Brewer, PhD
    National Institute on Deafness and Other Communication Disorders (NIDCD), National Institutes of Health (NIH), Bethesda, Maryland
  • Deanna Britton, PhD, CCC-SLP, BC-ANCDS
    Portland State University & Oregon Health and Science University, Portland, Oregon
  • Martin Brodsky, PhD, ScM, CCC-SLP
    Johns Hopkins University, Baltimore, Maryland
  • Jessica Brown, PhD, CCC-SLP
    University of Arizona, Tucson, Arizona
  • Leora Cherney, PhD, CCC-SLP, BC-ANCDS
    Shirley Ryan AbilityLab, Chicago, Illinois
  • Angela Ciccia, PhD, CCC-SLP
    Case Western Reserve University, Cleveland, Ohio
  • Heather Clark, PhD, CCC-SLP
    Mayo Clinic, Rochester, Minnesota
  • Matthew Cohen, PhD
    University of Delaware, Newark, Delaware
  • Alaina Davis, PhD, CCC-SLP, CBIST
    Howard University, Washington, District of Columbia
  • Melissa Duff, PhD, CCC-SLP
    Vanderbilt University, Nashville, Tennessee
  • Tanya Eadie, PhD, CCC-SLP
    University of Washington, Seattle, Washington
  • Rhonda Friedman, PhD
    Georgetown University, Washington, District of Columbia
  • Teresa Gray, PhD, CCC-SLP
    San Francisco State University, San Francisco, California
  • Juliet Haarbauer-Krupa, PhD
    Centers for Disease Control and Prevention, Atlanta, Georgia
  • Jennifer Lundine, PhD, CCC-SLP
    The Ohio State University, Columbus, Ohio
  • Jamila Minga, PhD, CCC-SLP
    Duke University, Durham, North Carolina
  • Kimberly Mueller, PhD, CCC-SLP
    University of Wisconsin, Madison, Wisconsin
  • Rita Patel, PhD, CCC-SLP
    Indiana University, Bloomington, Indiana
  • Angela Roberts, MA-SLP, PhD, CASLPO-Reg.
    Northwestern University, Evanston, Illinois; College of Audiology and Speech Language Pathology of Ontario, Toronto, Ontario, Canada
  • Margaret Rogers, PhD, CCC-SLP
    American Speech-Language-Hearing Association (ASHA), Rockville, Maryland
  • Gabrielle Saunders, PhD
    The University of Manchester, Manchester, United Kingdom
  • McKay Moore Sohlberg, PhD, CCC-SLP
    University of Oregon, Eugene, Oregon
  • Kristie Spencer, PhD, CCC-SLP
    University of Washington, Seattle, Washington

Emotion Behavior Neuropsychology

Emotion Behavior Neuropsychology

  • Lisa Brenner, PhD
    Veterans Affairs Rocky Mountain Mental Illness Research Education and Clinical Center, Denver, Colorado
    Co-Chair
  • Shannon Juengst, PhD, CRC
    University of Texas Southwestern Medical Center, Dallas, Texas
    Co-Chair
  • Ida Babakhanyan, PhD
    Defense and Veterans Brain Injury Center (DVBIC), Department of Defense, Camp Pendleton, San Diego, California
  • Charles Bombardier, PhD
    University of Washington, Seattle, Washington
  • Linda Ehrlich-Jones, RN, PhD
    Shirley Ryan AbilityLab, Chicago, Illinois
  • Jeanne Hoffman, PhD
    University of Washington, Seattle, Washington
  • Sonya Kim, PhD
    New York University Grossman School of Medicine, New York, New York
  • Robert Motl, PhD
    The University of Alabama at Birmingham, Birmingham, Alabama
  • Janet Niemeier, PhD
    Ackerson and Associates, Vestavia Hills, Alabama
  • Kristian Nitsch, PhD
    Shepherd Center, Atlanta, Georgia

Infant Pediatrics

Infant Pediatrics

  • Sharon Ramey, PhD
    Fralin Biomedical Research Institute at Virginia Tech Carilion, Roanoke, Virginia
    Co-Chair
  • Beth Slomine, PhD
    Kennedy Krieger Institute, Baltimore, Maryland
    Co-Chair
  • Margaret Turk, MD
    The State University of New York Upstate Medical University, Syracuse, New York
  • Keith Yeates, PhD
    University of Calgary, Calgary, Alberta, Canada

Motor Function

Motor Function

  • Catherine Lang, PT, PhD
    Washington University in St. Louis, St. Louis, Missouri
    Co-Chair
  • Steven Wolf, PhD, PT, FAPTA, FAHA
    Emory University, Atlanta, Georgia
    Co-Chair
  • Judith Burnfield, PT, PhD
    Madonna Rehabilitation Hospitals, Lincoln, Nebraska
  • Scott Delp, PhD
    Stanford University, Palo Alto, California
  • Gammon Earhart, PT, PhD, FAPTA
    Washington University in St. Louis, St. Louis, Missouri
  • Kathleen Friel, PhD
    Weill Cornell Medicine, New York, New York
  • David Gater, MD, PhD, MS
    University of Miami, Miami, Florida
  • Steve Kautz, PhD
    Medical University of South Carolina, Charleston, South Carolina
  • Jin-Shei Lai, PhD
    Northwestern University, Chicago, Illinois
  • Monica Perez, PT, PhD
    Shirley Ryan AbilityLab, Chicago, Illinois
  • Prudence Plummer, PhD, PT
    MGH Institute of Health Professions, Boston, Massachusetts
  • David Reinkensmeyer, PhD
    University of California Irvine, Irvine, California
  • Darcy Reisman, PT, PhD
    University of Delaware, Newark, Delaware
  • Linda Resnik, PT, PhD
    U.S. Department of Veteran Affairs, Providence, Rhode Island
  • Carolee Winstein, PhD, PT
    University of Southern California, Los Angeles, California
  • George Wittenberg, MD, PhD
    University of Pittsburgh, Pittsburgh, Pennsylvania

Participation

Participation

  • Elizabeth Rasch, PT, PhD
    National Institutes of Health Clinical Center, Bethesda, Maryland
    Co-Chair
  • Angelle Sander, PhD
    Baylor College of Medicine and TIRR Memorial Hermann, Houston, Texas
    Co-Chair
  • Amar Dhand, MD, DPhil
    Brigham and Women?s Hospital, Harvard Medical School, Boston, Massachusetts
  • Elizabeth Hahn, MA, PhD
    Northwestern University, Chicago, Illinois
  • Andrew Houtenville, PhD
    University of New Hampshire, Durham, New Hampshire
  • Sandra Kletzel, PhD
    U.S. Department of Veterans Affairs, Washington, District of Columbia
  • Susan Magasi, PhD
    University of Illinois Chicago, Chicago, Illinois
  • Trudy Mallinson, PhD
    The George Washington University, Washington, District of Columbia
  • Susan Stark, PhD
    Washington University in St. Louis, St. Louis, Missouri
  • Gale Whiteneck, PhD
    Craig Rehabilitation Hospital, Englewood, Colorado

Quality of Life

Quality of Life

  • Claire Kalpakjian, PhD, MS
    University of Michigan, Ann Arbor, Michigan
    Co-Chair
  • Allan Kozlowski, PhD
    Mary Free Bed Rehabilitation Hospital, Grand Rapids, Michigan
    Co-Chair
  • Dagmar Amtmann, PhD
    University of Washington, Seattle, Washington
  • David Cella, PhD
    Northwestern University, Chicago, Illinois
  • Emily Evans, PT, DPT, PhD
    Brown University, Providence, Rhode Island
  • Lisa Iezzoni, MD
    Massachusetts General Hospital, Boston, Massachusetts
  • Cindy Nowinski, MD, PhD
    Northwestern University, Chicago, Illinois
  • Pamela Roberts, PhD
    Cedars-Sinai, Los Angeles, California
  • David Tulsky, PhD
    University of Delaware, Newark, Delaware

Treatment/Intervention Data: Devices

Treatment/Intervention Data: Devices

  • Jonathan Pearlman, PhD
    University of Pittsburgh, Pittsburgh, Pennsylvania
    Co-Chair
  • Marcia Scherer, PhD, MPH, FACRM
    Institute for Matching Person and Technology, Webster, New York
    Co-Chair
  • Namrata Grampurohit, PhD, OTR/L
    Thomas Jefferson University, Philadelphia, Pennsylvania
  • Helen Hoenig, MD
    Durham Veterans Affairs Health Care System, Durham, North Carolina
  • Michelle Meade, PhD
    University of Michigan, Ann Arbor, Michigan
  • Ben Mortenson, PhD, OT
    University of British Columbia, Vancouver, British Columbia, Canada
  • Mark Schmeler, PhD, OTR/L, ATP
    University of Pittsburgh, Pittsburgh, Pennsylvania
  • Roger Smith, PhD, OT
    University of Wisconsin - Milwaukee, Milwaukee, Wisconsin

Treatment/Intervention Data: Therapies

Treatment/Intervention Data: Therapies

  • Anne Deutsch, RN, PhD
    Rehabilitation Institute of Chicago, Chicago, Illinois
    Co-Chair
  • James Graham, PhD, DC
    Colorado State University, Fort Collins, Colorado
    Co-Chair
  • Marcel Dijkers, PhD
    Icahn School of Medicine at Mount Sinai, New York, New York, ad hoc
  • Namrata Grampurohit, PhD, OTR/L
    Thomas Jefferson University, Philadelphia, Pennsylvania
  • Tessa Hart, PhD
    Moss Rehabilitation Research Institute, Elkins Park, Pennsylvania
  • Jacob Kean, PhD
    University of Utah School of Medicine, Salt Lake City, Utah
  • Addie Middleton, PhD, DPT
    Boston Healthcare System, Boston, Massachusetts
  • John Whyte, MD, PhD
    Moss Rehabilitation Research Institute, Elkins Park, Pennsylvania

NIH/NINDS/NICHD

NIH/NINDS/NICHD

  • Linda Bambrick, PhD
    National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, Maryland
  • Patrick Bellgowan, PhD
    National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, Maryland
  • Daofen Chen, PhD
    National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, Maryland
  • Theresa Hayes Cruz, PhD
    National Center for Medical Rehabilitation Research (NCMRR), National Institute of Child Health and Human Development (NICHD), National Institutes of Health (NIH), Bethesda, Maryland
  • Brooks Gross, PhD
    National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, Maryland
  • Sahana Kukke, PhD
    National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, Maryland
  • Sue Marden, PhD
    National Center for Medical Rehabilitation Research (NCMRR), National Institute of Child Health and Human Development (NICHD), National Institutes of Health (NIH), Bethesda, Maryland
  • M. Carolina Mendoza-Puccini, MD
    NINDS CDE Program Director, National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, Maryland

NINDS CDE Team

NINDS CDE Team

  • Damon Collie, MSHS
    The Emmes Company, LLC, Rockville, Maryland
  • Katelyn Gay, BS
    The Emmes Company, LLC, Rockville, Maryland
  • Muniza Sheikh, MS, MBA
    The Emmes Company, LLC, Rockville, Maryland
  • Ian Spector, BS, MPS
    The Emmes Company, LLC, Rockville, Maryland

Publications

A publication related to the NeuroRehab CDE initiative will be written at a later date. The citation for this publication will be included on this site as soon as it is available.

Updates

Please see attached revision history document. Please contact NINDSCDE@emmes.com if you require further information or have any questions about the revision history.

NeuroRehab CDEs Revision History