. 2025 Jul;106(7):981-988.

doi: 10.1016/j.apmr.2025.03.039. Epub 2025 Mar 26.

Common Data Elements for Rehabilitation Research in Neurologic Disorders (NeuroRehab CDEs)

Noelle E Carlozzi¹, M Carolina Mendoza-Puccini², Sue Marden³, Deborah Backus⁴, Linda Bambrick², Carolyn Baum⁵, Jonathan F Bean⁶, Lisa A Brenner⁷, Steven C Cramer⁸, Theresa Hayes Cruz³, Anne Deutsch⁹, Kimberly Frey¹⁰, Katelyn Gay¹¹, James E Graham¹², Robert K Heaton¹³, Shannon Juengst¹⁴, Claire Z Kalpakjian¹⁵, Allan J Kozlowski¹⁶, Catherine E Lang⁵, Jon Pearlman¹⁷, Adam Politis¹⁸, Sharon Ramey¹⁹, Elizabeth Rasch¹⁸, Angelle M Sander²⁰, Heidi Schambra²¹, Marcia J Scherer²², Beth S Slomine²³, Elizabeth W Twamley²⁴, Steven L Wolf²⁵, Allen W Heinemann²⁶

Affiliations

¹ Department of Physical Medicine and Rehabilitation, University of Michigan Medical School, Ann Arbor, MI. Electronic address: carlozzi@med.umich.edu.
² National Institute of Neurological Disorder and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, MD.
³ National Center for Medical Rehabilitation Research (NCMRR), Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), National Institutes of Health (NIH), Bethesda, MD.
⁴ Shepherd Center, Atlanta, GA.
⁵ Department of Occupational Therapy, Washington University in St. Louis, St. Louis, MO.
⁶ Department of Physical Medicine and Rehabilitation, Harvard Medical School, Boston, Massachusetts, New England GRECC, VA Boston Healthcare System, Spaulding Rehabilitation, Boston, MA.
⁷ University of Colorado, Aurora, CO.
⁸ University of California Los Angeles and California Rehabilitation Institute, Los Angeles, CA.
⁹ Shirley Ryan AbilityLab and Northwestern University Chicago, IL; RTI International, Research Triangle Park, NC.
¹⁰ Craig Hospital, Englewood, CO.
¹¹ The Emmes Company, LLC, Rockville, MD.
¹² Department of Occupational Therapy, Colorado State University, Fort Collins, CO.
¹³ Department of Psychiatry, University of California San Diego, La Jolla, CA.
¹⁴ Department of Physical Medicie and Rehabilitation, Baylor College of Medicine, Houston, TX and Brain Injury Research Center, TIRR Memorial Hermann, Houston, TX.
¹⁵ Department of Physical Medicine and Rehabilitation, University of Michigan Medical School, Ann Arbor, MI.
¹⁶ Mary Free Bed Rehabilitation Hospital, Grand Rapids, MI.
¹⁷ Department of Rehabilitation Science and Technology, University of Pittsburgh, Pittsburgh, PA.
¹⁸ Office of the Director, National Institutes of Health, Bethesda, MD.
¹⁹ Fralin Biomedical Research Institute at Virginia Tech Carilion, Roanoke, VA.
²⁰ Baylor College of Medicine and TIRR Memorial Hermann, Houston, TX.
²¹ NYU Langone Health and NYU Grossman School of Medicine, New York, NY.
²² Institute for Matching Person and Technology, Webster, New York and Department of Physical Medicine and Rehabilitation, University of Rochester School of Medicine and Dentistry, Rochester, NY.
²³ Kennedy Krieger Institute, John Hopkins University School of Medicine, Baltimore, MD.
²⁴ Department of Psychiatry, University of California San Diego, La Jolla, CA; VA San Diego Healthcare System, San Diego, CA.
²⁵ Department of Rehabilitation Medicine, Emory University School of Medicine, Atlanta, GA.
²⁶ Departments of Physical Medicine and Rehabilitation, and Medical Social Sciences, Northwestern University, Chicago, IL, and Center for Rehabilitation Outcomes Research, Shirley Ryan AbilityLab, Chicago, IL.

PMID: 40154859
PMCID: PMC12291098 (available on 2026-03-26)
DOI: 10.1016/j.apmr.2025.03.039

Common Data Elements for Rehabilitation Research in Neurologic Disorders (NeuroRehab CDEs)

Noelle E Carlozzi et al. Arch Phys Med Rehabil. 2025 Jul.

. 2025 Jul;106(7):981-988.

doi: 10.1016/j.apmr.2025.03.039. Epub 2025 Mar 26.

Authors

Affiliations

¹ Department of Physical Medicine and Rehabilitation, University of Michigan Medical School, Ann Arbor, MI. Electronic address: carlozzi@med.umich.edu.
² National Institute of Neurological Disorder and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, MD.
³ National Center for Medical Rehabilitation Research (NCMRR), Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), National Institutes of Health (NIH), Bethesda, MD.
⁴ Shepherd Center, Atlanta, GA.
⁵ Department of Occupational Therapy, Washington University in St. Louis, St. Louis, MO.
⁶ Department of Physical Medicine and Rehabilitation, Harvard Medical School, Boston, Massachusetts, New England GRECC, VA Boston Healthcare System, Spaulding Rehabilitation, Boston, MA.
⁷ University of Colorado, Aurora, CO.
⁸ University of California Los Angeles and California Rehabilitation Institute, Los Angeles, CA.
⁹ Shirley Ryan AbilityLab and Northwestern University Chicago, IL; RTI International, Research Triangle Park, NC.
¹⁰ Craig Hospital, Englewood, CO.
¹¹ The Emmes Company, LLC, Rockville, MD.
¹² Department of Occupational Therapy, Colorado State University, Fort Collins, CO.
¹³ Department of Psychiatry, University of California San Diego, La Jolla, CA.
¹⁴ Department of Physical Medicie and Rehabilitation, Baylor College of Medicine, Houston, TX and Brain Injury Research Center, TIRR Memorial Hermann, Houston, TX.
¹⁵ Department of Physical Medicine and Rehabilitation, University of Michigan Medical School, Ann Arbor, MI.
¹⁶ Mary Free Bed Rehabilitation Hospital, Grand Rapids, MI.
¹⁷ Department of Rehabilitation Science and Technology, University of Pittsburgh, Pittsburgh, PA.
¹⁸ Office of the Director, National Institutes of Health, Bethesda, MD.
¹⁹ Fralin Biomedical Research Institute at Virginia Tech Carilion, Roanoke, VA.
²⁰ Baylor College of Medicine and TIRR Memorial Hermann, Houston, TX.
²¹ NYU Langone Health and NYU Grossman School of Medicine, New York, NY.
²² Institute for Matching Person and Technology, Webster, New York and Department of Physical Medicine and Rehabilitation, University of Rochester School of Medicine and Dentistry, Rochester, NY.
²³ Kennedy Krieger Institute, John Hopkins University School of Medicine, Baltimore, MD.
²⁴ Department of Psychiatry, University of California San Diego, La Jolla, CA; VA San Diego Healthcare System, San Diego, CA.
²⁵ Department of Rehabilitation Medicine, Emory University School of Medicine, Atlanta, GA.
²⁶ Departments of Physical Medicine and Rehabilitation, and Medical Social Sciences, Northwestern University, Chicago, IL, and Center for Rehabilitation Outcomes Research, Shirley Ryan AbilityLab, Chicago, IL.

PMID: 40154859
PMCID: PMC12291098 (available on 2026-03-26)
DOI: 10.1016/j.apmr.2025.03.039

Abstract

Objective: Common data elements (CDEs) help harmonize data collection across clinical trials and observational studies, allowing for cross-study and cross-condition comparisons. Although CDEs exist for multiple clinical conditions and diseases, this work was extended only recently to neurorehabilitation research.

Design: Subgroups of clinical neurorehabilitation investigators operationalized a domain definition, selected applicable CDEs from 23 existing National Institute of Neurological Disorders and Stroke (NINDS) CDE projects and National Institutes of Health (NIH) CDE repositories, and identified areas needing further development. The subgroups also reviewed public comments on the NeuroRehab-specific CDEs, which were provided from September 1, 2021 to October 7, 2021. In March 2022, version 1.0 of the NeuroRehab CDEs was completed and can be found on the NINDS CDE website: https://www.commondataelements.ninds.nih.gov/.

Setting: NINDS and the Eunice Kennedy Shriver National Institute of Child Health and Human Development/National Center for Medical Rehabilitation Research identified NeuroRehab CDEs across 12 different research domains: (1) assessments and examinations; (2) comorbid and behavioral conditions; (3) motor function; (4) treatment/intervention data: therapies; (5) treatment/intervention data: devices; (6) cognitive; (7) communication; (8) emotion/behavior/neuropsychology; (9) activities of daily living/instrumental activities of daily living; (10) quality of life; (11) participation; and (12) infant and pediatrics. Within each domain, corresponding subdomain experts identified instruments with good psychometric measurement properties.

Participants: One hounded twenty experts (N=120) in rehabilitation across the 12 identified research domains and 2 cochairs with rehabilitation and measurement expertise provided oversight.

Interventions: Not applicable.

Main outcome measures: CDEs from 23 existing NINDS CDE projects and NIH CDE repositories.

Results: Clinical investigators recommended NeuroRehab CDEs within 3 dimensions of the NINDS CDE classifications: Core, (Disease) Core, and Supplemental-Highly Recommended. Most measures were categorized as Supplemental-Highly Recommended; few were identified as Core or Disease Core. The subgroups also identified measurement gap areas to guide future initiatives because NeuroRehab CDEs will be developed in the future.

Conclusions: These efforts are designed to accelerate rehabilitation research in neurologic disorders by allowing for cross-study and cross-condition comparisons and to encourage new CDE development.

Keywords: CDE; NCMRR; NICHD; National Institute of Neurological Disorders and Stroke; Rehabilitation; Research.

PubMed Disclaimer

Conflict of interest statement

Conflict of Interest: Dr. Cramer reports consulting relationships with Constant Therapeutics, BrainQ, Myomo, MicroTransponder, Panaxium, Beren Therapeutics, Medtronic, Stream Biomedical, NeuroTrauma Sciences, and TRCare; these relationships are outside of this submitted work. The other authors have nothing to disclose.

References

1. Neurological Rehabilitation. https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/neu.... Accessed August 25, 2023.
1. Barnes MP. Principles of neurological rehabilitation. J Neurol Neurosurg Psychiatry. 2003;74 Suppl 4(Suppl 4):iv3–iv7. - PMC - PubMed
1. Use of CDEs Supports the NIH Data Management and Sharing Policy. https://cde.nlm.nih.gov/home. Accessed June 14, 2023.
1. Schiariti V, Fowler E, Brandenburg JE, et al. A common data language for clinical research studies: the National Institute of Neurological Disorders and Stroke and American Academy for Cerebral Palsy and Developmental Medicine Cerebral Palsy Common Data Elements Version 1.0 recommendations. Dev Med Child Neurol 2018;60(10):976–986. - PubMed
1. Schiariti V, Shierk A, Stashinko EE, et al. Cerebral palsy pain instruments: Recommended tools for clinical research studies by the National Institute of Neurological Disorders and Stroke Cerebral Palsy Common Data Elements project. Dev Med Child Neurol 2023. - PMC - PubMed

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Common Data Elements for Rehabilitation Research in Neurologic Disorders (NeuroRehab CDEs)

Affiliations

Common Data Elements for Rehabilitation Research in Neurologic Disorders (NeuroRehab CDEs)

Authors

Affiliations

Abstract

Conflict of interest statement

References

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Medical

Miscellaneous