TBI in the News
NATIONAL NEUROTRAUMA SOCIETY 2017 (NNS) - COME MEET US!
FITBIR will have a booth at the NNS 2017 conference. Our staff will be available to answer questions and for 1-on-1 sessions.
UPDATED POLICY INFORMATION
(7/6/2017) Both the DoD and NIH strongly recommend CDE compliance for all clinical TBI studies, particularly those with a FITBIR data submission requirement. Moreover, it is highly recommended that investigators align their non-outcome measures with existing non-outcome CDE forms that have been developed and are available at the NINDS CDE website or through FITBIR. For any grant with a FITBIR data submission requirement, non-compliance with NINDS CDEs will require programmatic approval. Studies investigating outcomes outside of the TBI CDEs should use NINDS CDEs found in other disease areas or through searching the FITBIR Data Dictionary that has over 400 standardized forms available. As with non-CDE usage, incorporating non-TBI CDEs requires prior Programmatic approval.
BATMAN RELEASE: JANUARY 2017
EFORMS AVAILABLE IN DATA DICTIONARY
eForms are now accessible and can be viewed by all users in the Data Dictionary. Users will be able to add eForms when using ProFoRMS to manage protocols to electronically collect data.
SCHEMA MAPPING OF FITBIR DATA ELEMENTS
A schema mapping file is now part of the data elements reports of a Form Structure. The schema mapping file maps FITBIR’s Permissible Values to other systems’ data collecting standards for metadata such as the Clinical Data Interchange Standards Consortium (CDISC).
TBI NINDS Recommended Standard Data Collection Forms Now Available for Use: 421 TBI NINDS Standard recommended data collection forms are now ready to be used by the FITBIR User Community. This list can be viewed in the TBI Forms page.
Sports Related Concussion Common Data Element (CDE) Working Group: FITBIR has been working with the Sports-Related Concussion Common Data Element (CDE) Working Group classifying case report forms for sports-related concussions as they pertain to different timeframes in a subject’s injury history. FITBIR has been assisting in this process by providing current TBI unique data elements that have already been curated, which will be reviewed and converted for sports-related concussions CDEs.
FITBIR would like to welcome the following prospective studies:
- Approaches and Decision in Acute Pediatric TBI Trial (ADAPT) is an international study that includes institutions from the United States, United Kingdom, Australia, Spain, Netherlands, New Zealand, South Africa and India. This study will enroll 1,000 children with severe traumatic brain injury and require the placement of an ICP monitor.
- Transforming Research and Clinical Knowledge in Traumatic Brain Injury (TRACK-TBI) is a NINDS funded study that includes 11 U.S. sites that are collecting and analyzing data on 3000 subjects. As of February 28th, 2017, TRACK TBI has enrolled 1,979 subjects.
- Chronic Effects of Neurotrauma Consortium (CENC) is a multi-center collaboration of researchers from the DoD, VA, academic and private research institutions. This study focuses on mTBI among OEF/OIF/OND Service Members and Veterans.
- Concussion Assessment, Research and Education (CARE) Consortium is a multi-site study that aims that at better understanding the natural progression of sports-related concussions in athletes.
COMPLETE LIST OF SHARED FITBIR STUDIES AVAILABLE FOR DOWNLOAD
The following is a complete list of FITBIR Studies that have shared datasets available for download:
- The Center for Neurological and Regenerative Medicine (CNRM) own Diane Damiano , MD has successfully submitted data for her study Effects of Rapid-Resisted Exercise on Ambulatory Adults with Traumatic Brain Injury. The shared data includes 46 subjects who participated in the clinical trial that assessed the effects of exercise on brain function on ambulatory individuals with TBI.
- The National Institutes of Health Clinical Center (NIHCC) Leighton Chan, Ph. D has successful submitted data for his study Effect of Aerobic Exercise Training on Cardiorespiratory Function in Patients with TBI. The shared data includes 12 subjects and 9 data collection forms.
- The Uniformed Services University of Health Sciences (USUHS) own Michael Roy, MD, MPH, has successfully submitted data for his study Predictors of PTSD and Post Concussive Syndrome in OIF/OEF Veterans. The shared data includes 85 subjects and 18 data collection forms.
- Corinna E Lathan, Ph.D., from AnthroTronix, Inc, has successfully submitted data for her study An Independent, Prospective, Head-to-Head Study of the Reliability and Validity of Neurocognitive Test Batteries for the Assessment of Mild Traumatic Brain Injury. The shared data includes 233 subjects and 13 data collection forms.
- George Manley, MD, Ph. D, from the University of California, San Francisco, has successfully submitted data for his pilot study, Transforming Research and Clinical Knowledge in Traumatic Brain Injury (TRACK-TBI) Pilot. The shared data includes 599 subjects and 26 data collection forms.
- Emory University’s David Wright, MD and his collaborators at the Medical University of South Carolina (MUSC) for successfully and completely submitting legacy data from the Progesterone for Traumatic Brain Injury, Experimental Clinical Treatment (PROTECT III) trial to FITBIR. A special thanks to Cassidy Connor, MS and Yuko Palesch, Ph. D from MUSC for all of their support. The shared data includes 882 subjects and 39 data collection forms.
- The University of Maryland TBI researchers, Rao Gullapalli, MD and Chandler Sours, PhD for successfully and completely submitting data for the retrospective study, as well as, the prospective study for Maryland Magnetic Resonance Imaging of Neurotrauma Study (MagNeTS) to FITBIR. The shared data includes 332 subjects and 28 data collection forms.
- Boston University’s Anne McKee, MD and Lauren Murphy for successfully and completely submitting the Chronic Traumatic Encephalopathy (CTE) Consensus Slides images in FITBIR for their study Tauopathy Consensus Study of Pathology Images. These slides were discussed in the 2016 article in the Acta Neuropathologica Journal. The images are in a format that can be viewed using the freeware Aperio's ImageScope software. The shared data includes 25 subjects and the Imaging Digital Pathology data collection form.
- The University of Washington TBI researcher, Frederick Rivara, MD, successfully and completely submitted legacy data for the study Disability Form Pediatric Traumatic Brain Injury as part of the Child Health After Injury (CHAI) Study. The shared data includes to FITBIR 927 subjects and 49 data collection forms.
- Harvard Medical School and RTI International with Principal Investigators Ross Zafonte, DO and Helen Pan, PhD for successfully and completely submitting legacy data from the Citicoline Brain Injury Treatment Trial (COBRIT) to FITBIR. The shared data includes 1213 subjects and 56 data collection forms.
ANTMAN RELEASE: OCTOBER 2016
QUERY TOOL REDESIGN FOR USABILITY
The Query Tool has been redesigned with a sleek and elegant interface and improved performance. New features include helpful tips about Query Tool functionality, and a clear display for searching and viewing the data results. Additionally, users will be able to lock columns, adjust column width and retract filter panes for maximized data table size.
UPDATED SYSTEM TO TRACK UNIQUE IDENTIFIERS
Users are now able to view their registered PseudoGUIDs in the My GUIDs Section of the GUID Module. The system has linked the PseudoGUIDs to the converted GUIDs so users can keep track of their unique identifiers for each subject.
NETWORK ENHANCEMENTS FOR INCREASE SPEED AND IMPROVED PERFORMANCE
Upgrades to the system have increased the speed of the user interface, and improved performance of data upload and download. Network enhancements will maximize user experience and user workflow within the system.
JULY 1ST, 2015
TBI Investigators funded by the National Institute of Health (NIH) and The Department of Defense (DOD) have contributed over 200,000 patient clinical records from over 4500 patients to the FITBIR Informatics System. Over fifteen funded researchers have contributed as of July 1, 2015.
RFA-HD-16-001 - Secondary Analysis of Existing Database in Traumatic Brain Injury to Explore Outcomes Relevant to Medical Rehabilitation (R21) announced; application due date is October 31, 2015. Announcement
Dr. Mona Hicks and COL Dallas Hack recognized for their outstanding leadership to the development of the FITBIR Informatics System at FITBIR's 2nd Stakeholders Meeting in April 2015. NINDS Director Walter Koroshetz, MD presented the awards.
The Biomedical Research Informatics Computing System (BRICS), the platform used to support the FITBIR Informatics System, won the Best Overall Federal Health IT Award at the 2015 Digital Health Xchange & Innovation Event held in Washington, DC on March 4, 2015.
On July 15, 2015, NIH's Center for Technology awarded the 2015 Scientific Award of Merit for the development of the Biomedical Research Informatics Computing System (BRICS) to accelerate biomedical discovery through data sharing.
On August 7, 2015, it was announced that BRICS was selected as one of ten finalists, out of 130 nominations, for the 2015 GCN Award for Outstanding Information Technology Advancement in Government award. The awards ceremony will be held on October 14, 2015.