NeuroRehab

NeuroRehab Version 1.0 Coming Soon - January 2022

Data Standards

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), recently assembled an external working group of experts to identify and recommend a set of existing NIH/NINDS Common Data Elements for Rehabilitation Research in Neurological Disorders (NeuroRehab).

This first set of recommendations draws from existing CDEs across the NINDS CDE project and other NIH-supported CDE efforts. It includes data elements that the Working Group has classified as 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 identified.

For more information see the Overview tab.

Public Review Period for NeuroRehab CDEs: September 1 - 30, 2021

The NeuroRehab CDE Working Group and the NINDS CDE Team released a draft of the NeuroRehab version 1.0 CDEs, and they invited stakeholders for public comments on the CRFs, data dictionaries and CDEs/instruments selected in the context of Rehabilitation Research in Neurological Disorders.

After this open comment period, the NeuroRehab Working Group will review and revise the recommendations. The NeuroRehab Working Group and CDE Team will use the information submitted in response to this public review at their discretion and will not be responding to specific comments received during this public review period.

Version 1.0 of the NeuroRehab CDE recommendations will be posted in January 2022.

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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.

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.

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....)

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 Core or Supplemental – Highly Recommended.

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

Steering Committee Members

  • Noelle Carlozzi, PhD
    University of Michigan, Ann Arbor, Michigan
    Co-Chair
  • Allen Heinemann, PhD
    Northwestern University, Shirley Ryan AbilityLab, Chicago, Illinois
    Co-Chair
  • Deborah Backus, PhD
    Shepherd Center, Atlanta, Georgia
  • Carolyn Baum, PhD, OTR
    Washington University in St. Louis, St. Louis, Missouri
  • Jonathan Bean, MD, MS, MPH
    Harvard Medical School, Boston, Massachusetts
  • Lisa Brenner, PhD
    Veterans Affairs Rocky Mountain Mental Illness Research Education and Clinical Center, Denver, Colorado
  • Steven Cramer, MD
    University of California Los Angeles and California Rehabilitation Institute, Los Angeles, California
  • Anne Deutsch, RN, PhD
    Shirley Ryan AbilityLab, 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
    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, New York, New York
  • Marcia Scherer, PhD, MPH
    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
    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, 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, 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, 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
    North Carolina Central 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
    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
    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
    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
    Shirley Ryan AbilityLab, 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 Project Officer, 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
    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

There are no updates at this time.