Literature DB >> 25946381

Chapter 1 Common Data Elements and Federal Interagency Traumatic Brain Injury Research Informatics System for TBI Research.

Hilaire J Thompson, Monica S Vavilala, Frederick P Rivara.   

Abstract

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.

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Year:  2015        PMID: 25946381      PMCID: PMC4704986          DOI: 10.1891/0739-6686.33.1

Source DB:  PubMed          Journal:  Annu Rev Nurs Res        ISSN: 0739-6686


  13 in total

1.  Progress in developing common data elements for traumatic brain injury research: version two--the end of the beginning.

Authors:  Ramona Hicks; Joseph Giacino; Cynthia Harrison-Felix; Geoffrey Manley; Alex Valadka; Elisabeth A Wilde
Journal:  J Neurotrauma       Date:  2013-09-09       Impact factor: 5.269

2.  Suicidal ideation following traumatic brain injury: prevalence rates and correlates in adults living in the community.

Authors:  Theodore Tsaousides; Joshua B Cantor; Wayne A Gordon
Journal:  J Head Trauma Rehabil       Date:  2011 Jul-Aug       Impact factor: 2.710

Review 3.  Common data elements in radiologic imaging of traumatic brain injury.

Authors:  E Mark Haacke; Ann Christine Duhaime; Alisa D Gean; Gerard Riedy; Max Wintermark; Pratik Mukherjee; David L Brody; Thomas DeGraba; Timothy D Duncan; Elie Elovic; Robin Hurley; Lawrence Latour; James G Smirniotopoulos; Douglas H Smith
Journal:  J Magn Reson Imaging       Date:  2010-09       Impact factor: 4.813

4.  Common data elements for pediatric traumatic brain injury: recommendations from the biospecimens and biomarkers workgroup.

Authors:  Rachel P Berger; Sue R Beers; Linda Papa; Michael Bell
Journal:  J Neurotrauma       Date:  2011-11-22       Impact factor: 5.269

Review 5.  Chapter 1 Common Data Elements and Federal Interagency Traumatic Brain Injury Research Informatics System for TBI Research.

Authors:  Hilaire J Thompson; Monica S Vavilala; Frederick P Rivara
Journal:  Annu Rev Nurs Res       Date:  2015

6.  Standardizing data collection in traumatic brain injury.

Authors:  Andrew I R Maas; Cynthia L Harrison-Felix; David Menon; P David Adelson; Tom Balkin; Ross Bullock; Doortje C Engel; Wayne Gordon; Jean Langlois-Orman; Henry L Lew; Claudia Robertson; Nancy Temkin; Alex Valadka; Mieke Verfaellie; Mark Wainwright; David W Wright; Karen Schwab
Journal:  J Neurotrauma       Date:  2011-02-05       Impact factor: 5.269

7.  Common data elements for research on traumatic brain injury: pediatric considerations.

Authors:  A Cate Miller; Joanne Odenkirchen; Ann-Christine Duhaime; Ramona Hicks
Journal:  J Neurotrauma       Date:  2012-01-04       Impact factor: 5.269

8.  Classification of traumatic brain injury for targeted therapies.

Authors:  Kathryn E Saatman; Ann-Christine Duhaime; Ross Bullock; Andrew I R Maas; Alex Valadka; Geoffrey T Manley
Journal:  J Neurotrauma       Date:  2008-07       Impact factor: 5.269

9.  Transforming research and clinical knowledge in traumatic brain injury pilot: multicenter implementation of the common data elements for traumatic brain injury.

Authors:  John K Yue; Mary J Vassar; Hester F Lingsma; Shelly R Cooper; David O Okonkwo; Alex B Valadka; Wayne A Gordon; Andrew I R Maas; Pratik Mukherjee; Esther L Yuh; Ava M Puccio; David M Schnyer; Geoffrey T Manley
Journal:  J Neurotrauma       Date:  2013-09-24       Impact factor: 5.269

10.  TBI surveillance using the common data elements for traumatic brain injury: a population study.

Authors:  Latha Ganti Stead; Aakash N Bodhit; Pratik Shashikant Patel; Yasamin Daneshvar; Keith R Peters; Anna Mazzuoccolo; Sudeep Kuchibhotla; Christa Pulvino; Kelsey Hatchitt; Lawrence Lottenberg; Marie-Carmelle Elie-Turenne; Robyn M Hoelle; Abhijna Vedula; Andrea Gabrielli; Bayard D Miller; John H Slish; Michael Falgiani; Tricia Falgiani; J Adrian Tyndall
Journal:  Int J Emerg Med       Date:  2013-02-27
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  17 in total

Review 1.  A beginner's guide to data stewardship and data sharing.

Authors:  Marcel P Dijkers
Journal:  Spinal Cord       Date:  2019-02-05       Impact factor: 2.772

2.  Unsupervised Machine Learning Reveals Novel Traumatic Brain Injury Patient Phenotypes with Distinct Acute Injury Profiles and Long-Term Outcomes.

Authors:  Kaitlin A Folweiler; Danielle K Sandsmark; Ramon Diaz-Arrastia; Akiva S Cohen; Aaron J Masino
Journal:  J Neurotrauma       Date:  2020-03-11       Impact factor: 5.269

Review 3.  Chapter 1 Common Data Elements and Federal Interagency Traumatic Brain Injury Research Informatics System for TBI Research.

Authors:  Hilaire J Thompson; Monica S Vavilala; Frederick P Rivara
Journal:  Annu Rev Nurs Res       Date:  2015

4.  Sex Differences in Traumatic Brain Injury: What We Know and What We Should Know.

Authors:  Raeesa Gupte; William Brooks; Rachel Vukas; Janet Pierce; Janna Harris
Journal:  J Neurotrauma       Date:  2019-07-19       Impact factor: 5.269

5.  Data Dissemination: Shortening the Long Tail of Traumatic Brain Injury Dark Data.

Authors:  Bridget E Hawkins; J Russell Huie; Carlos Almeida; Jiapei Chen; Adam R Ferguson
Journal:  J Neurotrauma       Date:  2019-03-29       Impact factor: 5.269

Review 6.  Developing a data sharing community for spinal cord injury research.

Authors:  Alison Callahan; Kim D Anderson; Michael S Beattie; John L Bixby; Adam R Ferguson; Karim Fouad; Lyn B Jakeman; Jessica L Nielson; Phillip G Popovich; Jan M Schwab; Vance P Lemmon
Journal:  Exp Neurol       Date:  2017-05-30       Impact factor: 5.330

7.  Mapping outcomes for recovery of consciousness in studies from 1986 to 2020: a scoping review protocol.

Authors:  Jennifer Weaver; Alison Cogan; Parie Bhandari; Bint-E Awan Zainab; Erica Jacobs; Ariana Pape; Chantal Nguyen; Ann Guernon; Tom Harrod; Theresa Bender Pape; Trudy Mallinson
Journal:  BMJ Open       Date:  2022-06-30       Impact factor: 3.006

8.  Feasibility of an International Multiple Sclerosis Rehabilitation Data Repository: Perceived Challenges and Motivators for Sharing Data.

Authors:  Elissa Held Bradford; Ilse Baert; Marcia Finlayson; Peter Feys; Joanne Wagner
Journal:  Int J MS Care       Date:  2018 Jan-Feb

9.  Challenges to the Standardization of Trauma Data Collection in Burn, Traumatic Brain Injury, Spinal Cord Injury, and Other Trauma Populations: A Call for Common Data Elements for Acute and Longitudinal Trauma Databases.

Authors:  Laura C Simko; Liang Chen; Dagmar Amtmann; Nicole Gibran; David Herndon; Karen Kowalske; A Cate Miller; Eileen Bulger; Ryan Friedman; Audrey Wolfe; Kevin K Chung; Michael Mosier; James Jeng; Joseph Giacino; Ross Zafonte; Lewis E Kazis; Jeffrey C Schneider; Colleen M Ryan
Journal:  Arch Phys Med Rehabil       Date:  2018-10-26       Impact factor: 4.060

10.  Pre-Clinical Testing of Therapies for Traumatic Brain Injury.

Authors:  Douglas S DeWitt; Bridget E Hawkins; C Edward Dixon; Patrick M Kochanek; William Armstead; Cameron R Bass; Helen M Bramlett; Andras Buki; W Dalton Dietrich; Adam R Ferguson; Edward D Hall; Ronald L Hayes; Sidney R Hinds; Michelle C LaPlaca; Joseph B Long; David F Meaney; Stefania Mondello; Linda J Noble-Haeusslein; Samuel M Poloyac; Donald S Prough; Claudia S Robertson; Kathryn E Saatman; Sandy R Shultz; Deborah A Shear; Douglas H Smith; Alex B Valadka; Pamela VandeVord; Liying Zhang
Journal:  J Neurotrauma       Date:  2018-08-30       Impact factor: 4.869

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