References

• This Project has been funded in whole or in part with Federal funds from the National Institute of Neurological Disorders and Stroke, National Institutes of Health under Contract No. 75N95022C00041 (Oct. 2022 - current), Contract No. HHSN271201700064C (Oct. 2017 - Sept. 2022), Contract No. HHSN271201200034C (Oct. 2012 - Sept. 2017) and Contract No. N01-NS-7-2372 (May 2002 - Sept. 2012).
   
• Download the NINDS CDE General Flyer. Please contact us directly at: NINDSCDE@emmes.com for the most recent updates.

Publications

• General (For all diseases)
• Amyotrophic Lateral Sclerosis
• Cerebral Palsy
• Chiari I Malformation
• Congenital Muscular Dystrophy
• Epilepsy
• Friedreich's Ataxia
• Mitochondrial Disease
• NeuroRehab
• Spinal Cord Injury
• Stroke
• Traumatic Brain Injury

General (For all diseases)

• Sheehan J, Hirschfeld S, Foster E, Ghitza U, Goetz K, Karpinski J, Lang L, Moser RP, Odenkirchen J, Reeves D, Rubinstein Y, Werner E, Huerta M. Improving the value of clinical research through the use of Common Data Elements. Clin Trials. 2016 Dec;13(6):671-676. Epub 2016 Jun 15. PubMed PMID: 27311638.
• Shapiro E, Bernstein J, Adams HR, Barbier AJ, Buracchio T, Como P, Delaney KA, Eichler F, Goldsmith JC, Hogan M, Kovacs S, Mink JW, Odenkirchen J, Parisi MA, Skrinar A, Waisbren SE, Mulberg AE. Neurocognitive clinical outcome assessments for inborn errors of metabolism and other rare conditions. Mol Genet Metab. 2016 Jun;118(2):65-9. PubMed PMID: 27132782.
• Grinnon ST, Miller K, Marler JR, Lu Y, Stout A, Odenkirchen J, Kunitz S. National Institute of Neurological Disorders and Stroke Common Data Element Project - approach and methods. Clin Trials. 2012 Jun;9(3):322–329. PubMed PMID: 22371630.
• Stone K. NINDS common data element project: A long-awaited breakthrough in streamlining trials. Ann Neurol., 2010 Jul; 68(1): A11–A13. PubMed PMID: 20583225.

Amyotrophic Lateral Sclerosis

• Sherman AV, Gubitz AK, Al-Chalabi A, Bedlack R, Berry J, Conwit R, Harris BT, Horton DK, Kaufmann P, Leitner ML, Miller R, Shefner J, Vonsattel JP, Mitsumoto H.2013. Infrastructure resources for clinical research in amyotrophic lateral sclerosis. Amyotroph Lateral Scler Frontotemporal Degener. 2013 May; 14 Suppl 1:53-61. PubMed PMID: 23678880.

Cerebral Palsy

• Schiariti V, Fowler E, Brandenburg JE, Levey E, Mcintyre S, Sukal-Moulton T, Ramey SL, Rose J, Sienko S, Stashinko E, Vogtle L, Feldman RS, Koenig JI. 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):976-86. Mar 15. doi: 10.1111/dmcn.13723. [Epub ahead of print] Review. PubMed PMID: 29542813.
• Schiariti V, Shierk A, Stashinko EE, Sukal-Moulton T, Feldman RS, Aman C, Mendoza-Puccini MC, Brandenburg JE; National Institute of Neurological Disorders and Stroke Cerebral Palsy Common Data Elements Oversight Committee. 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. 2024 May;66(5):610-622. doi: 10.1111/dmcn.15743. Epub 2023 Aug 31. PMID: 37650571; PMCID: PMC10902183.

Chiari I Malformation

• Luciano MG, Batzdorf U, Kula RW, Rocque BG, Maher CO, Heiss J, Martin BA, Bolognese PA, Ashley-Koch A, Limbrick D, Poppe DJ, Esposito KM, Odenkirchen J, Esterlitz JR, Ala'i S, Joseph K, Feldman RS, Riddle R; Chiari I Malformation Common Data Element Working Group. Development of Common Data Elements for Use in Chiari Malformation Type I Clinical Research: An NIH/NINDS Project. Neurosurgery. 2019 Dec 1;85(6):854-860. doi: 10.1093/neuros/nyy475. PMID: 30690581; PMCID: PMC7054710.

Congenital Muscular Dystrophy

• Allamand V, Merlini L, Bushby K on behalf of the Consortium for Collagen VI-related myopathies.166th ENMC International Workshop on Collagen type VI related Myopathies, 22-24 May 2009, Naarden, The Netherlands. Neuromuscular Disorders (2010). 20:346-354. PubMed PMID: 20211562.
• Mercuri E, Messina S, Bruno C, Mora M, Pegoraro E, Comi GP, et al. Congenital muscular dystrophies with defective glycosylation of dystroglycan: a population study. Neurology 2009; 26:1802-1809. PubMed PMID: 19299310.
• Nadeau A, Kinali M, Main M, Jimenez-Mallebrera C, Aloysius A, Clement E, North B, Manzur AY, Robb SA, Mercuri E, Muntoni F. Natural history of Ullrich congenital muscular dystrophy. Neurology 2009 Jul 7;73 (1): 25-31. PubMed PMID: 19564581.
• Bonnemann C G (2009) Congenital Muscular Dystrophy. In: Squire LR (ed.) Encyclopedia of Neuroscience, volume 3, pp. 67-74. Oxford: Academic Press.

Epilepsy

• Grinnon ST, Miller K, Marler JR, Lu Y, Stout A, Odenkirchen J, Kunitz S. National Institute of Neurological Disorders and Stroke Common Data Element Project - approach and methods. Clin Trials. 2012 Jun; 9(3):322–329. PubMed PMID: 22371630.
• Loring DW, Lowenstein DH, Barbaro NM, Fureman BE, Odenkirchen J, Jacobs MP, Austin JK, Dlugos DJ, French JA, Gaillard WD, Hermann BP, Hesdorffer DC, Roper SN, Van Cott AC, Grinnon S, Stout A. Common data elements in epilepsy research: Development and implementation of the NINDS epilepsy CDE project. Epilepsia. 2011 Jun; 52(6):1186–1191. PubMed PMID: 21426327.
• Loring, DW & Hermann, BP. Neuropsychology and the epilepsy common data element project. In: Helmstaedter, C, Lassonde, M, Hermann, B, Kahane, P, and Arzimanoglou, A. Neuropsychology in the Care of People with Epilepsy. Paris: John Libbey Eurotext; 2011:59–68.

Friedreich's Ataxia

• Lynch DR, Pandolfo M, Schulz JB, Perlman S, Delatycki MB, Payne RM, Shaddy R, Fischbeck KH, Farmer J, Kantor P, Raman SV, Hunegs L, Odenkirchen J, Miller K, Kaufmann P. Common data elements for clinical research in Friedreich's ataxia. Mov Disord. 2013 Feb; 28(2):1–5. PubMed PMID: 23239403.

Mitochondrial Disease

• Karaa A, Rahman S, Lombès A, Yu-Wai-Man P, Sheikh MK, Alai-Hansen S, Cohen BH, Dimmock D, Emrick L, Falk MJ, McCormack S, Mirsky D, Moore T, Parikh S, Shoffner J, Taivassalo T, Tarnopolsky M, Tein I, Odenkirchen JC, Goldstein A; Mito Working Group Member Participants:. Common data elements for clinical research in mitochondrial disease: a National Institute for Neurological Disorders and Stroke project. J Inherit Metab Dis. 2017 May;40(3):403-414. doi: 10.1007/s10545-017-0035-5. Epub 2017 Mar 16. Erratum in: J Inherit Metab Dis. 2018 Jan;41(1):151. doi: 10.1007/s10545-017-0081-z. PMID: 28303425; PMCID: PMC7783474.

NeuroRehab

• Carlozzi NE, Mendoza-Puccini MC, Marden S, Backus D, Bambrick L, Baum C, Bean JF, Brenner LA, Cramer SC, Cruz TH, Deutsch A, Frey K, Gay K, Graham JE, Heaton RK, Juengst S, Kalpakjian CZ, Kozlowski AJ, Lang CE, Pearlman J, Politis A, Ramey S, Rasch E, Sander AM, Schambra H, Scherer MJ, Slomine BS, Twamley EW, Wolf SL, Heinemann AW. Common Data Elements for Rehabilitation Research in Neurologic Disorders (NeuroRehab CDEs). Arch Phys Med Rehabil. 2025 Jul;106(7):981-988. doi: 10.1016/j.apmr.2025.03.039. Epub 2025 Mar 26. PMID: 40154859.

Spinal Cord Injury

Publications related to the development of the International Spinal Cord Injury Data Sets

• Dvorak MF, Wing PC, Fehlings MG, Vaccaro AR, Itshayek E, Biering-Sorensen F, Noonan VK. International Spinal Cord Injury Spinal Column Injury Basic Data Set. Spinal Cord. 2012 Nov; 50(11):817–821. PubMed PMID: 22665221.
• Charlifue S, Post MW, Biering-Sørensen F, Catz A, Dijkers M, Geyh S, Horsewell J, Noonan V, Noreau L, Tate D, Sinnott KA. International Spinal Cord Injury Quality of Life Basic Data Set. Spinal Cord. 2012 Sep; 50(9):672–675. PubMed PMID: 22450884.
• Karlsson AK, Krassioukov A, Alexander MS, Donovan W, Biering-Sørensen F. International Spinal Cord Injury Skin and Thermoregulation Function Basic Data Set. Spinal Cord, 2012 Jul; 50(7):512–516. PubMed PMID: 22289898
• Biering-Sørensen F, Krassioukov A, Alexander MS, Donovan W, Karlsson AK, Mueller G, Perkash I, William Sheel A, Wecht J, Schilero GJ.International Spinal Cord Injury Pulmonary Function Basic Data Set. Spinal Cord. 2012 Jun; 50(6):418–421. PubMed PMID: 22270192.
• Bauman WA, Biering-Sørensen F, Krassioukov A. International spinal cord injury endocrine and metabolic function basic data set. Spinal Cord. 2011 Oct; 49(10):1068–1072. PubMed PMID: 21577217.
• Alexander MS, Biering-Sørensen F, Elliott S, Kreuter M, Sønksen J. International Spinal Cord Injury Male Sexual Function Basic Data Set. Spinal Cord. 2011 Jul; 49(7):795–798. PubMed PMID: 21283085.
• Alexander MS, Biering-Sørensen F, Elliott S, Kreuter M, Sønksen J. International Spinal Cord Injury Female Sexual and Reproductive Function Basic Data Set. Spinal Cord. 2011 Jul; 49(7):787–790. PubMed PMID: 21383760.
• Devivo MJ, Biering-Sorensen F, New P, Chen Y. Standardization of data analysis and reporting of results from the International Spinal Cord Injury Core Data Set. Spinal Cord. 2011 May; 49 (5): 596–599. PubMed PMID: 21135863.
• Krassioukov A, Alexander MS, Karlsson AK, Donovan W, Mathias CJ, Biering-Sørensen F. International Spinal Cord Injury Cardiovascular Function Basic Data Set. Spinal Cord. 2010 Aug; 48(8):586–590. PubMed PMID: 20101250.
• Biering-Sørensen F, Craggs M, Kennelly M, Schick E, Wyndaele J-J. International urinary tract imaging basic spinal cord injury data set. Spinal Cord. 2009 May; 47(5):379–383. PubMed PMID: 19030013.
• Yue JK, Chan AK, Winkler EA, Upadhyayula PS, Readdy WJ, Dhall SS. A review and update on the guidelines for the acute management of cervical spinal cord injury - Part II. J Neurosurg Sci. 2016 Sep;60(3):367-84. Epub 2015 Sep 9. Review. PubMed PMID: 26354186.
• Biering-Sørensen F, Noonan VK. Standardization of Data for Clinical Use and Research in Spinal Cord Injury. Brain Sci. 2016 Aug 12;6(3). pii: E29. doi: 10.3390/brainsci6030029. Review. PubMed PMID: 27529284.
• Krogh K, Perkash I, Stiens SA, Biering-Sørensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar; 47(3):235–241. PubMed PMID: 18725886.
• Carroll A, Vogel LC, Zebracki K, Noonan VK, Biering-Sørensen F, Mulcahey MJ. Relevance of the international spinal cord injury basic data sets to youth: an Inter-Professional review with recommendations. Spinal Cord. 2017 Feb 28. doi: 10.1038/sc.2017.14. [Epub ahead of print] PubMed PMID: 28244501.
• Krogh K, Perkash I, Stiens SA, Biering-Sørensen F. International bowel function basic spinal cord injury data set. Spinal Cord. 2009 Mar; 47(3):230–234. PubMed PMID: 18725887.
• Widerström-Noga E, Biering-Sørensen F, Bryce T, Cardenas DD, Finnerup NB, Jensen MP, Richards S, Siddall PJ. The International Spinal Cord Injury Pain Basic Data Set. Spinal Cord. 2008 Dec; 46(12):818–823. PubMed PMID: 18521092.
• Biering-Sørensen F, Craggs M, Kennelly M, Schick E, Wyndaele JJ. International urodynamic basic spinal cord injury data set. Spinal Cord, 2008 Jul; 46(7):513–516. PubMed PMID: 18227849.
• Biering-Sørensen F, Craggs M, Kennelly M, Schick E, Wyndaele JJ. International lower urinary tract function basic spinal cord injury data set. Spinal Cord. 2008 May; 46(5):325–330. PubMed PMID: 18040278.

Publications related to the SCI CDE effort

• DeVivo M, Biering-Sørensen F, Charlifue S, Noonan V, Post M, Stripling T, Wing P. International Spinal Cord Injury Core Data Set. Spinal Cord. 2006 Sep; 44(9):535–540. PubMed PMID: 16955073.
• Biering-Sørensen F, Charlifue S, DeVivo M, Noonan V, Post M, Stripling T, Wing P. International Spinal Cord Injury Data Sets. Spinal Cord. 2006 Sep; 44(9):530–534. PubMed PMID: 16955072.
• Bauman WA, Wecht JM, Biering-Sørensen F. International spinal cord injury endocrine and metabolic extended data set. Spinal Cord. 2017 May;55(5):466–477. doi: 10.1038/sc.2016.164. Epub 2017 Mar 21. PubMed PMID: 28322240.
• Mulcahey MJ, Vogel LC, Sheikh M, Arango-Lasprilla JC, Augutis M, Garner E, Hagen EM, Jakeman LB, Kelly E, Martin R, Odenkirchen J, Scheel-Sailer A, Schottler J, Taylor H, Thielen CC, Zebracki K. Recommendations for the National Institute for Neurologic Disorders and Stroke spinal cord injury common data elements for children and youth with SCI. Spinal Cord. 2017;55(4):331–340. PubMed PMID: 27845358.
• Biering-Sørensen F, Alai S, Anderson K, Charlifue S, Chen Y, DeVivo M, Flanders A, Jones L, Kleitman N, Lans A, Noonan V, Odenkirchen J, Steeves J, Tansey K, Widerström-Noga E, Jakeman L. Common data elements for spinal cord injury clinical research: A National Institute for Neurological Disorders and Stroke project. Spinal Cord. 2015 Apr; 53(4):265–277. Pub Med PMID: 25665542.
• Biering-Sørensen F, Noonan V, and Odenkirchen J. International spinal cord injury data sets and the National Institute of Neurological Disorders and Stroke common data elements project. In: Chhabra HS, ed. ISCoS Textbook of Comprehensive Management of Spinal Cord Injuries. 1st ed. New Delhi: Wolters Kluwer (India) Pvt., Ltd; 2015:1121–1160.
• Biering-Sørensen F, Charlifue S, Devivo MJ, Grinnon ST, Kleitman N, Lu Y, Odenkirchen J. Using the Spinal Cord Injury Common Data Elements. Top Spinal Cord Inj Rehabil. 2012 Winter; 18(1):23–27. PubMed PMID: 22408366.
• Biering-Sørensen F, Charlifue S, DeVivo MJ, Grinnon ST, Kleitman N, Lu Y, Odenkirchen J. Incorporation of the International Spinal Cord Injury Data Set Elements into the National Institute of Neurological Disorders and Stroke Common Data Elements. Spinal Cord. 2011 Jan; 49(1):60–64. PubMed PMID: 20733589.
• Dvorak MF, Wing PC, Fehlings MG, Vaccaro AR, Itshayek E, Biering-Sorensen F, Noonan VK. International Spinal Cord Injury Spinal Column Injury Basic Data Set. Spinal Cord. 2012 Nov; 50(11):817–821. PubMed PMID: 22665221.
• Charlifue S, Post MW, Biering-Sørensen F, Catz A, Dijkers M, Geyh S, Horsewell J, Noonan V, Noreau L, Tate D, Sinnott KA. International Spinal Cord Injury Quality of Life Basic Data Set. Spinal Cord. 2012 Sep; 50(9):672–675. PubMed PMID: 22450884.
• Karlsson AK, Krassioukov A, Alexander MS, Donovan W, Biering-Sørensen F. International Spinal Cord Injury Skin and Thermoregulation Function Basic Data Set. Spinal Cord, 2012 Jul; 50(7):512–516. PubMed PMID: 22289898
• Biering-Sørensen F, Krassioukov A, Alexander MS, Donovan W, Karlsson AK, Mueller G, Perkash I, William Sheel A, Wecht J, Schilero GJ.International Spinal Cord Injury Pulmonary Function Basic Data Set. Spinal Cord. 2012 Jun; 50(6):418–421. PubMed PMID: 22270192.
• Bauman WA, Biering-Sørensen F, Krassioukov A. International spinal cord injury endocrine and metabolic function basic data set. Spinal Cord. 2011 Oct; 49(10):1068–1072. PubMed PMID: 21577217.
• Alexander MS, Biering-Sørensen F, Elliott S, Kreuter M, Sønksen J. International Spinal Cord Injury Male Sexual Function Basic Data Set. Spinal Cord. 2011 Jul; 49(7):795–798. PubMed PMID: 21283085.
• Alexander MS, Biering-Sørensen F, Elliott S, Kreuter M, Sønksen J. International Spinal Cord Injury Female Sexual and Reproductive Function Basic Data Set. Spinal Cord. 2011 Jul; 49(7):787–790. PubMed PMID: 21383760.
• Devivo MJ, Biering-Sorensen F, New P, Chen Y. Standardization of data analysis and reporting of results from the International Spinal Cord Injury Core Data Set. Spinal Cord. 2011 May; 49 (5): 596–599. PubMed PMID: 21135863.
• Krassioukov A, Alexander MS, Karlsson AK, Donovan W, Mathias CJ, Biering-Sørensen F. International Spinal Cord Injury Cardiovascular Function Basic Data Set. Spinal Cord. 2010 Aug; 48(8):586–590. PubMed PMID: 20101250.
• Biering-Sørensen F, Craggs M, Kennelly M, Schick E, Wyndaele J-J. International urinary tract imaging basic spinal cord injury data set. Spinal Cord. 2009 May; 47(5):379–383. PubMed PMID: 19030013.
• Yue JK, Chan AK, Winkler EA, Upadhyayula PS, Readdy WJ, Dhall SS. A review and update on the guidelines for the acute management of cervical spinal cord injury - Part II. J Neurosurg Sci. 2016 Sep;60(3):367-84. Epub 2015 Sep 9. Review. PubMed PMID: 26354186.
• Biering-Sørensen F, Noonan VK. Standardization of Data for Clinical Use and Research in Spinal Cord Injury. Brain Sci. 2016 Aug 12;6(3). pii: E29. doi: 10.3390/brainsci6030029. Review. PubMed PMID: 27529284.
• Krogh K, Perkash I, Stiens SA, Biering-Sørensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar; 47(3):235–241. PubMed PMID: 18725886.
• Carroll A, Vogel LC, Zebracki K, Noonan VK, Biering-Sørensen F, Mulcahey MJ. Relevance of the international spinal cord injury basic data sets to youth: an Inter-Professional review with recommendations. Spinal Cord. 2017 Feb 28. doi: 10.1038/sc.2017.14. [Epub ahead of print] PubMed PMID: 28244501.
• Krogh K, Perkash I, Stiens SA, Biering-Sørensen F. International bowel function basic spinal cord injury data set. Spinal Cord. 2009 Mar; 47(3):230–234. PubMed PMID: 18725887.
• Widerström-Noga E, Biering-Sørensen F, Bryce T, Cardenas DD, Finnerup NB, Jensen MP, Richards S, Siddall PJ. The International Spinal Cord Injury Pain Basic Data Set. Spinal Cord. 2008 Dec; 46(12):818–823. PubMed PMID: 18521092.
• Biering-Sørensen F, Craggs M, Kennelly M, Schick E, Wyndaele JJ. International urodynamic basic spinal cord injury data set. Spinal Cord, 2008 Jul; 46(7):513–516. PubMed PMID: 18227849.
• Biering-Sørensen F, Craggs M, Kennelly M, Schick E, Wyndaele JJ. International lower urinary tract function basic spinal cord injury data set. Spinal Cord. 2008 May; 46(5):325–330. PubMed PMID: 18040278.
• DeVivo M, Biering-Sørensen F, Charlifue S, Noonan V, Post M, Stripling T, Wing P. International Spinal Cord Injury Core Data Set. Spinal Cord. 2006 Sep; 44(9):535–540. PubMed PMID: 16955073.
• Biering-Sørensen F, Charlifue S, DeVivo M, Noonan V, Post M, Stripling T, Wing P. International Spinal Cord Injury Data Sets. Spinal Cord. 2006 Sep; 44(9):530–534. PubMed PMID: 16955072.

Stroke

• Lee S, Mirsky DM, Beslow LA, Amlie-Lefond C, Danehy AR, Lehman L, Stence NV, Vossough A, Wintermark M, Rivkin MJ; International Paediatric Stroke Study Neuroimaging Consortium and the Paediatric Stroke Neuroimaging Consortium. Pathways for Neuroimaging of Neonatal Stroke. Pediatr Neurol. 2017 Apr;69:37–48. doi: 10.1016/j.pediatrneurol.2016.12.008. Epub 2017 Jan 26. Review. PubMed PMID: 28262550.
• Liebeskind DS, Albers GW, Crawford K, Derdeyn CP, George MS, Palesch YY, Toga AW, Warach S, Zhao W, Brott TG, Sacco RL, Khatri P, Saver JL, Cramer SC, Wolf SL, Broderick JP, Wintermark M. Imaging in StrokeNet: Realizing the Potential of Big Data. Stroke. 2015 Jul;46(7):2000-6. PubMed PMID: 26045600; PubMed Central PMCID: PMC4557967.
• Saver JL, Warach S, Janis S, Odenkirchen J, Becker K, Benavente O, Broderick J, Dromerick AW, Duncan P, Elkind MS, Johnston K, Kidwell CS, Meschia JF, Schwamm L; National Institute of Neurological Disorders and Stroke (NINDS) Stroke Common Data Element Working Group. Standardizing the structure of stroke clinical and epidemiologic research data: the National Institute of Neurological Disorders and Stroke (NINDS) Stroke Common Data Element (CDE) project. Stroke. 2012 Apr; 43(4):967–973. PubMed PMID: 22308239.
• Towfighi A, Cheng E, Macias M, et al. Randomized controlled trial of a coordinated care intervention to improve risk factor control after stroke or transient ischemic attack in the safety net: Secondary stroke prevention by Uniting Community and Chronic care model teams Early to End Disparities (SUCCEED). BMC Neurology [serial online]. February 6, 2017;17:1-20. Available from: Academic Search Complete, Ipswich, MA. Accessed July 18, 2017

Traumatic Brain Injury

• Hicks, R. The International TBI Common Data Elements Project: Getting Farther, Faster. The Challenge. Summer 2013; 7(3):6–7.
• Hicks R, Giacino J, Harrison-Felix CL, Manley GT, Valadka A, and Wilde EA. Progress in developing common data elements for traumatic brain injury research: Version two – The end of the beginning. J Neurotrauma. 2013 Nov; 30(22):1852–1861. PubMed PMID: 23725058.
• Yue JK, Vassar MJ, Lingsma H, Cooper SR, Yuh EL, Mukherjee P, Puccio AM, Gordon W, Okonkwo DO, Valadka A, Schnyer DM, Maas A, Manley GT, Casey SS, Cheong M, Dams-O'Connor K, Hricik AJ, Knight EE, Kulubya ES, Menon D, Morabito DJ, Pacheco JL, Sinha TK. Transforming Research and Clinical Knowledge in Traumatic Brain Injury (TRACK-TBI) Pilot: Multicenter implementation of the common data elements for traumatic brain injury. J Neurotrauma. 2013 Nov; 30(22):1831—1844. PubMed PMID: 23815563
• Maas AI, Harrison-Felix CL, Menon D, Adelson PD, Balkin T, Bullock R, Engel DC, Gordon W, Orman JL, Lew HL, Robertson C, Temkin N, Valadka A, Verfaellie M, Wainwright M, Wright DW, Schwab K. Common data elements for traumatic brain injury: recommendations from the interagency working group on demographics and clinical assessment. Arch Phys Med Rehabil. 2010 Nov;91(11):1641–1649. PubMed PMID: 21044707.
• Okonkwo DO, Yue JK, Puccio AM, Panczykowski DM, Inoue T, McMahon PJ, Sorani MD, Yuh EL, Lingsma HF, Maas AI, Valadka AB, Manley GT; Transforming Research and Clinical Knowledge in Traumatic Brain Injury (TRACK-TBI) Investigators. GFAP-BDP as an acute diagnostic marker in traumatic brain injury: results from the prospective transforming research and clinical knowledge in traumatic brain injury study. J Neurotrauma. 2013 Sep; 30(17):1490–1497. PubMed PMID: 23489259.
• Yue JK, Vassar MJ, Lingsma HF, Cooper SR, Okonkwo DO, Valadka AB, Gordon WA, Maas AI, Mukherjee P, Yuh EL, Puccio AM, Schnyer DM, Manley GT; TRACK-TBI Investigators. Transforming research and clinical knowledge in traumatic brain injury pilot: multicenter implementation of the common data elements for traumatic brain injury. J Neurotrauma. 2013 Nov 15;30(22):1831–1844. doi: 10.1089/neu.2013.2970. Epub 2013 Sep 24. PubMed PMID: 23815563.
• Yuh EL, Mukherjee P, Lingsma HF, Yue JK, Ferguson AR, Gordon WA, Valadka AB, Schnyer DM, Okonkwo DO, Maas AI, Manley GT; TRACK-TBI Investigators. Magnetic resonance imaging improves 3-month outcome prediction in mild traumatic brain injury. Ann Neurol. 2013 Feb; 73(2):224–235. PubMed PMID: 23224915.
• Grove MJ, Lamberty GJ, Gatewood LC, Johnson LM. Traumatic brain injury rehabilitation: analysis of common data elements. Stud Health Technol Inform. 2013;192:1186. PubMed PMID: 23920960.
• Maas AI, Harrison-Felix CL, Menon D, Adelson PD, Balkin T, Bullock R, Engel DC, Gordon W, Langlois-Orman J, Lew HL, Robertson C, Temkin N, Valadka A, Verfaellie M, Wainwright M, Wright DW, Schwab K. Standardizing data collection in traumatic brain injury. J Neurotrauma. 2011 Feb; 28(2):177–187. PubMed PMID: 21162610.
• Haacke EM, Duhaime AC, Gean AD, Riedy G, Wintermark M, Mukherjee P, Brody DL, DeGraba T, Duncan TD, Elovic E, Hurley R, Latour L, Smirniotopoulos JG, Smith DH. Common data elements in radiologic imaging of traumatic brain injury. J Magn Reson Imaging. 2010 Sep; 32(3):516–543. PubMed PMID: 20815050.
• Thompson HJ, Vavilala MS, Rivara FP. Chapter 1 Common Data Elements and Federal Interagency Traumatic Brain Injury Research Informatics System for TBI Research. Annu Rev Nurs Res. 2015;33:1-11. doi: 10.1891/0739–6686.33.1. Review. PubMed PMID: 25946381.
• Harburg L, McCormack E, Kenney K, Moore C, Yang K, Vos P, Jacobs B, Madden CJ, Diaz-Arrastia R, Bogoslovsky T. Reliability of the NINDS common data elements cranial tomography (CT) rating variables for traumatic brain injury (TBI). Brain Inj. 2017;31(2):174-184. doi: 10.1080/02699052.2016.1225989. Epub 2016 Dec 12. PubMed PMID: 27936952.
• Traumatic brain injury: time to end the silence. Lancet Neurol. 2010 Apr; 9(4):331. PubMed PMID: 20298955.
• Manley GT M D Ph D, MacDonald CL, Markowitz A, Stephenson D, Robbins A, Gardner RC, Winkler EA, Bodien Y, Taylor S, Yue JK, Kannan L, Kumar A, McCrea M, Wang KKW. The Traumatic Brain Injury Endpoints Development (TED) Initiative: Progress on a Public-Private Regulatory Collaboration to Accelerate Diagnosis and Treatment of Traumatic Brain Injury. J Neurotrauma. 2017 Mar 31. doi: 10.1089/neu.2016.4729. [Epub ahead of print] PubMed PMID: 28363253.
• Miller G. Neuroscience. New guidelines aim to improve studies of traumatic brain injury. Science. 2010 Apr 16; 328(5976):297. PubMed PMID: 20395488.

Publications in the Journal of Neurotrauma 2012

• Miller AC, Odenkirchen J, Duhaime AC, Hicks R. Common data elements for research on traumatic brain injury: pediatric considerations. J Neurotrauma. 2012 Mar; 29(4):634–638. PubMed PMID:22091862.
• Adelson PD, Pineda J, Bell MJ, Abend NS, Berger RP, Giza CC, Hotz G, Wainwright MS; Pediatric TBI Demographics and Clinical Assessment Working Group. Common data elements for pediatric traumatic brain injury: recommendations from the working group on demographics and clinical assessment. J Neurotrauma. 2012 Mar; 29(4):639–653. PubMed PMID: 21939389.
• Berger RP, Beers SR, Papa L, Bell M; Pediatric TBI CDE Biospecimens and Biomarkers Workgroup. Common data elements for pediatric traumatic brain injury: recommendations from the biospecimens and biomarkers workgroup. J Neurotrauma. 2012 Mar; 29(4):672–677. PubMed PMID: 22106839.
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