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.

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 Alcohol Use Item Banks	N/A
PROMIS Alcohol Use Item Banks	N/A
PROMIS Alcohol Use Item Banks	N/A
PROMIS Dyspnea Item Banks	N/A
PROMIS Dyspnea Item Banks	N/A
PROMIS Dyspnea Item Banks	N/A

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 Cognitive Function Item Banks	N/A
PROMIS Cognitive Function Item Banks	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 Self-Efficacy for Managing Chronic Conditions Item Bank	N/A
PROMIS Self-Efficacy for Managing Chronic Conditions Item Bank	N/A

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 Anxiety Item Bank	N/A
PROMIS Anxiety Item Bank	N/A
PROMIS Depression Item Bank	N/A
PROMIS Depression Item Bank	N/A

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 Scale v1.2 - Global Health	CDE Details
PROMIS Scale 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 Pain Behavior Item Bank and Short Form	N/A
PROMIS Pain Behavior Item Bank and Short Form	N/A
PROMIS Pain Behavior Item Bank and Short Form	N/A
PROMIS Pain Interference Item Bank	N/A
PROMIS Pain Interference Item Bank	N/A
PROMIS Pain Interference Item Bank	N/A

Participation
CRF Module/Guidance	CDEs
PROMIS Ability to Participate Item Bank and Short Forms	N/A
PROMIS Ability to Participate Item Bank and Short Forms	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 Sleep Item Banks	N/A
PROMIS Sleep Item Banks	N/A
PROMIS Sleep Item Banks	N/A

Speech
CRF Module/Guidance	CDEs
Acoustic Analysis of Speech	N/A
Acoustic Analysis of Speech	N/A
Assessment of Intelligibility of Dysarthric Speech (AIDS)	N/A
Assessment of Intelligibility of Dysarthric Speech (AIDS)	N/A
Assessment of Intelligibility of Dysarthric Speech (AIDS)	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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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 (Until 2024)

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

Data Standards

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

Form Search Instructions - Please Read Before Searching

Prospective Assessments for Suicidal Ideation and Behavior

Instrument Notice of Copyright Information

Overview

Roster

Oversight Committee

Oversight Committee

Steering Committee Members

Steering Committee Members

Activities of Daily Living

Activities of Daily Living

Assessments and Examinations

Assessments and Examinations

Comorbid and Behavioral Conditions

Comorbid and Behavioral Conditions

Cognitive

Cognitive

Communication

Communication

Emotion Behavior Neuropsychology

Emotion Behavior Neuropsychology

Infant Pediatrics

Infant Pediatrics

Motor Function

Motor Function

Participation

Participation

Quality of Life

Quality of Life

Treatment/Intervention Data: Devices

Treatment/Intervention Data: Devices

Treatment/Intervention Data: Therapies

Treatment/Intervention Data: Therapies

NIH/NINDS/NICHD

NIH/NINDS/NICHD

NINDS CDE Team

NINDS CDE Team

Publications

Updates