Common Data Elements and Federal Interagency Traumatic Brain Injury Research Informatics System for TBI Research
Open accessAbstract
Despite increased attention to traumatic brain injury (TBI), there remains no specific treatment and available interventions focus rather on the prevention of secondary injury. One of the reasons posited for the lack of a successful therapy is the amalgamation of various types of injuries under the same severity category in clinical trials. Informatics approaches have been suggested as a means to develop an improved classification system for TBI. As a result of federal interagency efforts, common data elements (CDEs) for TBI have now been developed. Further, the Federal Interagency Traumatic Brain Injury Research Informatics System (FITBIR) has been created and is now available for TBI researchers to both add and retrieve data. This chapter will discuss the goals, development, and evolution of the CDEs and FITBIR and discuss how these tools can be used to support TBI research. A specific exemplar using the CDEs and lessons learned from working with the CDEs and FITBIR are included to aid future researchers.
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
Clinical databases such as TRACK-TBI, FITBIR, and IMPACT that serve as integrated repositories for multi-dimensional outcome assessments, genomic/proteomic data, neuroimaging and blood biomarkers for civilian, sports, and military TBI are becoming important tools in evaluating the impact of sex on TBI outcomes and experimental treatments.
“Clinical databases such as TRACK-TBI, FITBIR, and IMPACT that serve as integrated repositories for multi-dimensional outcome assessments, genomic/proteomic data, neuroimaging and blood biomarkers for civilian, sports, and military TBI are becoming important tools in evaluating the impact of sex on TBI outcomes and experimental treatments. 112-114”
From Sex Differences in Traumatic Brain Injury: What We Know and What We Should Know (2019) · cites this paper as [113]
Self-check
Percentages, sums and reported differences re-computed from the paper’s own numbers.
The self-check needs the paper’s full text.
Cites
Classification of traumatic brain injury for targeted therapies
Saatman, K. E., Duhaime, A.-C., Bullock, R., Maas, A. I. R., Valadka, A., & Manley, G. T. (2008) · Journal of Neurotrauma · doi:10.1089/neu.2008.0586 · Cited by 1,141 · see citing works
Yue, J. K., Vassar, M. J., Lingsma, H. F., Cooper, S. R., Okonkwo, D. O., Valadka, A. B., Gordon, W. A., Maas, A. I. R., Mukherjee, P., Yuh, E. L., et al. (2013) · Journal of Neurotrauma · doi:10.1089/neu.2013.2970 · Cited by 371 · see citing works
Common Data Elements in Radiologic Imaging of Traumatic Brain Injury
Duhaime, A., Gean, A. D., Haacke, E. M., Hicks, R. R., Wintermark, M., Mukherjee, P., Brody, D. L., Latour, L. L., & Riedy, G. P. (2010) · Archives of Physical Medicine and Rehabilitation · doi:10.1016/j.apmr.2010.07.238 · Cited by 250 · see citing works
Maas, A. I. R., Harrison-Felix, C. L., Menon, D. K., Adelson, P. D., Balkin, T., Bullock, R., Engel, D. C., Gordon, W. A., Orman, J. A., Lew, H. L., et al. (2010) · Archives of Physical Medicine and Rehabilitation · doi:10.1016/j.apmr.2010.07.232 · Cited by 193 · see citing works
Hicks, R., Giacino, J., Harrison-Felix, C., Manley, G., Valadka, A., & Wilde, E. A. (2013) · Journal of Neurotrauma · doi:10.1089/neu.2013.2938 · Cited by 183 · see citing works
Common data elements in radiologic imaging of traumatic brain injury
Haacke, E. M., Duhaime, A. C., Gean, A. D., Riedy, G. P., Wintermark, M., Mukherjee, P., Brody, D. L., DeGraba, T. J., Duncan, T. D., Elovic, E. P., et al. (2010) · Journal of Magnetic Resonance Imaging · doi:10.1002/jmri.22259 · Cited by 179 · see citing works
Standardizing Data Collection in Traumatic Brain Injury
Maas, A. I. R., Harrison-Felix, C. L., Menon, D. K., Adelson, P. D., Balkin, T., Bullock, R., Engel, D. C., Gordon, W. A., Orman, J. A., Lew, H. L., et al. (2010) · Journal of Neurotrauma · doi:10.1089/neu.2010.1617 · Cited by 175 · see citing works
Manley, G. T., Diaz-Arrastia, R. R., Brophy, M. T., Engel, D. C., Goodman, C. J., Gwinn, K. A., Veenstra, T. D., Ling, G. S. F., Ottens, A. K., Tortella, F. C., et al. (2010) · Archives of Physical Medicine and Rehabilitation · doi:10.1016/j.apmr.2010.05.018 · Cited by 151 · see citing works
Adelson, P. D., Pineda, J., Bell, M. J., Abend, N. S., Berger, R. P., Giza, C. C., Hotz, G., & Wainwright, M. S. (2012) · Journal of Neurotrauma · doi:10.1089/neu.2011.1952 · Cited by 93 · see citing works
Suicidal Ideation Following Traumatic Brain Injury
Tsaousides, T., Cantor, J. B., & Gordon, W. A. (2011) · Journal of Head Trauma Rehabilitation · doi:10.1097/htr.0b013e3182225271 · Cited by 76 · see citing works
Berger, R. P., Beers, S. R., Papa, L., & Bell, M. J. (2011) · Journal of Neurotrauma · doi:10.1089/neu.2011.1861 · Cited by 42 · see citing works
Common Data Elements for Research on Traumatic Brain Injury: Pediatric Considerations
Miller, A. C., Odenkirchen, J. C., Duhaime, A., & Hicks, R. R. (2011) · Journal of Neurotrauma · doi:10.1089/neu.2011.1932 · Cited by 37 · see citing works
TBI surveillance using the common data elements for traumatic brain injury: a population study
Ganti, L., Bodhit, A. N., Patel, P. S., Daneshvar, Y., Peters, K., Mazzuoccolo, A., Kuchibhotla, S., Pulvino, C., Hatchitt, K., Lottenberg, L. L., et al. (2013) · International Journal of Emergency Medicine · doi:10.1186/1865-1380-6-5 · Cited by 32 · see citing works
Flagged first, then by citations
Research works printed but not linked: 2
- Federal Interagency Traumatic Brain Injury Research Informatics System (FITBIR) 2014 FAQs Retrieved August 29, 2014 from https://fitbir.nih.gov/jsp/about/faqs.jsp PMC4704986 25946381
- Pope AM Tarlov AR 1991 Disability in America: A National Agenda for prevention Washington, DC National Academies Press
Cited by
Sorted by citations
Sex Differences in Traumatic Brain Injury: What We Know and What We Should Know
Gupte, R. P., Brooks, W. M., Vukas, R. R., Pierce, J. D., & Harris, J. L. (2019) · Journal of Neurotrauma · doi:10.1089/neu.2018.6171 · Cited by 533 · see citing works
A Multidimensional Approach to Post-concussion Symptoms in Mild Traumatic Brain Injury
Polinder, S., Cnossen, M. C., Real, R. G. L., Covic, A., Gorbunova, A., Voormolen, D. C., Master, C. L., Haagsma, J. A., Diaz-Arrastia, R., & von Steinbuechel, N. (2018) · Frontiers in Neurology · doi:10.3389/fneur.2018.01113 · Cited by 376 · see citing works
Walker, W. C., Carne, W. F., Franke, L. M., Nolen, T. L., Dikmen, S. D., Cifu, D. X., Wilson, K. E., Belanger, H. G., & Williams, R. L. (2016) · Brain Injury · doi:10.1080/02699052.2016.1219061 · Cited by 105 · see citing works
Pre-Clinical Testing of Therapies for Traumatic Brain Injury
DeWitt, D. S., Hawkins, B. E., Dixon, C. E., Kochanek, P. M., Armstead, W. M., Bass, C. R., Bramlett, H. M., Büki, A., Dietrich, W. D., Ferguson, A. R., et al. (2018) · Journal of Neurotrauma · doi:10.1089/neu.2018.5778 · Cited by 85 · see citing works
Folweiler, K. A., Sandsmark, D. K., Diaz-Arrastia, R. R., Cohen, A. S., & Masino, A. J. (2020) · Journal of Neurotrauma · doi:10.1089/neu.2019.6705 · Cited by 63 · see citing works
Developing a data sharing community for spinal cord injury research
Callahan, A., Anderson, K. D., Beattie, M. S., Bixby, J. L., Ferguson, A. R., Fouad, K., Jakeman, L. B., Nielson, J. L., Popovich, P. G., Schwab, J. M., et al. (2017) · Experimental Neurology · doi:10.1016/j.expneurol.2017.05.012 · Cited by 53 · see citing works
O'Neil, M. E., Harik, J. M., McDonagh, M. S., Cheney, T. P., Hsu, F. C., Cameron, D. C., Carlson, K. F., Norman, S. B., & Hamblen, J. L. (2020) · Journal of Traumatic Stress · doi:10.1002/jts.22520 · Cited by 41 · see citing works
Big Data in traumatic brain injury; promise and challenges
Agoston, D. V., & Langford, D. (2017) · Concussion · doi:10.2217/cnc-2016-0013 · Cited by 36 · see citing works
Chou, A., Espin, A. T., Huie, J. R., Krukowski, K., Lee, S., Nolan, A., Guglielmetti, C., Hawkins, B. E., Chaumeil, M. M., Manley, G. T., et al. (2022) · Neurotrauma Reports · doi:10.1089/neur.2021.0061 · Cited by 32 · see citing works
Magnetoencephalography abnormalities in adult mild traumatic brain injury: A systematic review
Allen, C. M., Halsey, L., Topcu, G., Rier, L., Gascoyne, L. E., Scadding, J. W., Furlong, P. L., Dunkley, B. T., das Nair, R., Brookes, M. J., et al. (2021) · NeuroImage Clinical · doi:10.1016/j.nicl.2021.102697 · Cited by 32 · see citing works
The Imaging Database for Epilepsy And Surgery ( IDEAS )
Taylor, P. N., Wang, Y., Simpson, C. M., Janiukstyte, V., Horsley, J., Leiberg, K., Little, B., Clifford, H. J., Adler, S., Vos, S. B., et al. (2024) · Epilepsia · doi:10.1111/epi.18192 · Cited by 27 · see citing works
A new open-access platform for measuring and sharing mTBI data
Domel, A. G., Raymond, S., Giordano, C., Liu, Y., Yousefsani, S. A., Fanton, M., Cecchi, N. J., Vovk, O., Pirozzi, I., Kight, A., et al. (2021) · Scientific Reports · doi:10.1038/s41598-021-87085-2 · Cited by 25 · see citing works
A beginner’s guide to data stewardship and data sharing
Dijkers, M. P. J. M. (2019) · Spinal Cord · doi:10.1038/s41393-018-0232-6 · Cited by 21 · see citing works
Data Dissemination: Shortening the Long Tail of Traumatic Brain Injury Dark Data
Hawkins, B. E., Huie, J. R., de Almeida, C., Chen, J., & Ferguson, A. R. (2019) · Journal of Neurotrauma · doi:10.1089/neu.2018.6192 · Cited by 18 · see citing works
TBI and Sleep–Wake Disorders: Pathophysiology, Clinical Management, and Moving towards the Future
Baumann, C. R., & Werner, J. K. (2017) · Seminars in Neurology · doi:10.1055/s-0037-1604487 · Cited by 16 · see citing works
Simko, L. C., Chen, L., Amtmann, D., Gibran, N. S., Herndon, D. N., Kowalske, K. J., Miller, A. C., Bulger, E. M., Friedman, R., Wolfe, A. E., et al. (2018) · Archives of Physical Medicine and Rehabilitation · doi:10.1016/j.apmr.2018.10.004 · Cited by 16 · see citing works
A practical guide to data management and sharing for biomedical laboratory researchers
Fouad, K., Vavrek, R., Surles-Zeigler, M. C., Huie, J. R., Radabaugh, H. L., Gurkoff, G. G., Visser, U., Grethe, J. S., Martone, M. E., Ferguson, A. R., et al. (2024) · Experimental Neurology · doi:10.1016/j.expneurol.2024.114815 · Cited by 13 · see citing works
Development of an informatics system for accelerating biomedical research.
Navale, V., Ji, M., Vovk, O., Misquitta, L., Gebremichael, T., Garcia, A., Fann, Y. C., & McAuliffe, M. (2019) · F1000Research · doi:10.12688/f1000research.19161.2 · Cited by 11 · see citing works
Eagle, S. R., Temkin, N. R., Barber, J. K., McCrea, M., Giacino, J. T., Okonkwo, D. O., Manley, G. T., Nelson, L. D., & for the TRACK-TBI Investigators (2025) · Neurology · doi:10.1212/wnl.0000000000213427 · Cited by 9 · see citing works
Windle, K., & Sullivan, K. A. (2019) · Applied Neuropsychology Adult · doi:10.1080/23279095.2019.1660880 · Cited by 9 · see citing works
Short review: The impact of sex on neuroimmune and cognitive outcomes after traumatic brain injury
Krukowski, K. (2021) · Brain Behavior & Immunity - Health · doi:10.1016/j.bbih.2021.100327 · Cited by 9 · see citing works
Yaseen, A. S., Robertson, C. S., Navarro, J. C., Chen, J., Heckler, B., DeSantis, S. M., Temkin, N. R., Barber, J. K., Foreman, B. P., Diaz-Arrastia, R. R., et al. (2023) · Journal of Neurotrauma · doi:10.1089/neu.2023.0023 · Cited by 8 · see citing works
OBIA: An Open Biomedical Imaging Archive
Jin, E., Zhao, D., Wu, G., Zhu, J., Wang, Z., Wei, Z., Zhang, S., Wang, A., Tang, B., Chen, X., et al. (2023) · Genomics Proteomics & Bioinformatics · doi:10.1016/j.gpb.2023.09.003 · Cited by 7 · see citing works
Feasibility of an International Multiple Sclerosis Rehabilitation Data Repository
Bradford, E. H., Baert, I., Finlayson, M. L., Feys, P., & Wagner, J. M. (2017) · International Journal of MS Care · doi:10.7224/1537-2073.2016-009 · Cited by 6 · see citing works
Common Data Elements for Concussion in Tertiary Care: Phase One in Ontario
Hunt, C., Michalak, A., Ouchterlony, D., Marshall, S., Masanic, C. A., Vaidyanath, C., Bhalerao, S., Cusimano, M. D., Quon, D., Fischer, L. K., et al. (2017) · Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques · doi:10.1017/cjn.2017.222 · Cited by 6 · see citing works
The Frequency of Neuropsychiatric Sequelae After Traumatic Brain Injury in the Global South
Ganesh, A., Shamli, S. A., Mahadevan, S. K., Chan, M. F., Burke, D. T., Al‐Rasadi, K., Saadoon, M. A., & Al‐Adawi, S. (2023) · Sultan Qaboos University medical journal · doi:10.18295/squmj.12.2023.088 · Cited by 6 · see citing works
Translationally Relevant Magnetic Resonance Imaging Markers in a Ferret Model of Closed Head Injury
Hutchinson, E., Romero-Lozano, A., Johnson, H. R., Knutsen, A. K., Bosomtwi, A., Korotcov, A., Shunmugavel, A., King, S., Schwerin, S., Juliano, S., et al. (2022) · Frontiers in Neuroscience · doi:10.3389/fnins.2021.779533 · Cited by 4 · see citing works
Niemeier, J. P. (2019) · Current Physical Medicine and Rehabilitation Reports · doi:10.1007/s40141-019-00238-3 · Cited by 5 · see citing works
Agoston, D. V. (2021) · Frontiers in Neurology · doi:10.3389/fneur.2021.752937 · Cited by 5 · see citing works
Simons, M. U., Nelson, L. D., McCrea, M., Balsis, S. M., Hoelzle, J. B., & Magnus, B. E. (2022) · Journal of the International Neuropsychological Society · doi:10.1017/s1355617722000807 · Cited by 5 · see citing works
Colaizzi, T. A., Kenna, A. C., Knight, A. R., Clermont, C., Currao, A., & Fortier, C. B. (2025) · Journal of Head Trauma Rehabilitation · doi:10.1097/htr.0000000000001112 · Cited by 4 · see citing works
Wolters, L., White, W. F., Ellerton, H., Watson, S., Psaila, K., Ford, C. E. L., & Gracey, F. (2023) · Developmental Neurorehabilitation · doi:10.1080/17518423.2023.2301607 · Cited by 3 · see citing works
Sleep–Wake Disorders After Traumatic Brain Injury: Pathophysiology, Clinical Management, and Future
Seenivasan, S., Kiley, D. J., Kile, M., & Werner, J. K. (2025) · Seminars in Neurology · doi:10.1055/a-2605-8706 · Cited by 3 · see citing works
Pickett, T. C., Walker, W. C., Lippa, S. M., Lange, R. T., Brickell, T. A., Dittmer, T. A., Smith, J. M., Cifu, D. X., & French, L. M. (2023) · Archives of Physical Medicine and Rehabilitation · doi:10.1016/j.apmr.2023.02.003 · Cited by 3 · see citing works
A minimum data set for traumatic brain injuries in Iran
Edalatfar, M., Sadeghi-Naini, M., Kashani, H. R. K., Movahed, M., & Sharif-Alhoseini, M. (2021) · Chinese Journal of Traumatology · doi:10.1016/j.cjtee.2021.09.007 · Cited by 3 · see citing works
Weaver, J., Cogan, A. M., Bhandari, P., Awan, B.-E., Jacobs, E. B., Pape, A., Nguyen, C., Guernon, A., Harrod, T., The Recovery of Consciousness (RECON) Team, et al. (2022) · BMJ Open · doi:10.1136/bmjopen-2021-056538 · Cited by 2 · see citing works
Navale, V., & McAuliffe, M. (2022) · Data Intelligence · doi:10.1162/dint_a_00125 · Cited by 2 · see citing works
Ganesh, A., Shamli, S. A., Mahadevan, S. K., Chan, M. F., Burke, D. T., Al‐Rasadi, K., Saadoon, M. A., & Al‐Adawi, S. (2022) · SSRN Electronic Journal · doi:10.2139/ssrn.4047137 · Cited by 2 · see citing works
Eagle, S. R., Gardner, R. C., Jain, S., Sun, X., Puccio, A. M., Brent, D. A., Nelson, L. D., McCrea, M., Giacino, J. T., Okonkwo, D. O., et al. (2025) · Brain Communications · doi:10.1093/braincomms/fcaf123 · Cited by 3 · see citing works
Fitterer, A. N., Ledbetter, L., Duquette, P. J., Switzer, A., Fletcher, M. A., Smith, J. L., & Reuter‐Rice, K. (2026) · Brain Injury · doi:10.1080/02699052.2026.2625369 · Cited by 1 · see citing works
Clinical Trials for Traumatic Brain Injury: Designs and Challenges
Lü, J., & Gormley, M. A. (2018) · Neuromethods · doi:10.1007/978-1-4939-8564-7_22
Wilde, E. A., & Ware, A. L. (2019) · Cambridge University Press eBooks · doi:10.1017/9781139696432.023
Goeckner, B. D., Meyer, E., Fry, H., Ferreira, E., Andersson, M. J., O’Malley, O., Mannix, R., & Meier, T. B. (2026) · Journal of Neurotrauma · doi:10.1177/08977151261460628
Alam, T., Olson, S. D., & Cox, C. S. (2026) · Neurotrauma Reports · doi:10.1177/2689288x261481806
Omics-guided therapeutic translation in acute traumatic brain injury
Nynatten, L. R. V., Cela, E., Wilson, A., Ball, I. M., & Fraser, D. D. (2026) · Frontiers in Pharmacology · doi:10.3389/fphar.2026.1968318
- Authors
- Thompson, H. J., Vavilala, M. S., & Rivara, F. P.
- Venue
- Annual Review of Nursing Research
- Publisher
- Springer Publishing Company
- Published
- 2015-05
- Volume
- 33
- Issue
- 1
- Pages
- 1-11
- ISSN
- 0739-6686 (ISSN-L)
- 1944-4028
- PMC
- PMC4704986
- OpenAlex
- W2277708352
- Cited by
- 46
- References
- 12
- Citations by year
- 2026: 4 · 2025: 4 · 2024: 2 · 2023: 5 · 2022: 6 · 2021: 5 · 2020: 3 · 2019: 7 · 2018: 4 · 2017: 5 · 2016: 1
- FWCI
- 2.61
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Annual Review of Nursing Research (publishedVersion)
- PubMed (publishedVersion)
- Europe PMC (PubMed Central) (acceptedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Institute of Neurological Disorders and Stroke (R01NS077913)
- Topics
- Health Sciences › Medicine › Epidemiology › Traumatic Brain Injury Research
- Health Sciences › Health Professions › Health Information Management › Electronic Health Records Systems
- Physical Sciences › Computer Science › Information Systems › Research Data Management Practices
- Keywords
- traumatic brain injury, common data elements, research informatics, secondary injury prevention, clinical trials, data sharing
- MeSH terms
- Brain Injuries, Government Agencies, Humans, Medical Informatics, United States, Federal Government, Biomedical Research, National Institute of Neurological Disorders and Stroke (U.S.), Common Data Elements
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review
