The Traumatic Brain Injury Model Systems National Data and Statistical Center
PI: Cindy Harrison-Felix, PhD
Funded by: National Institute on Disability and Rehabilitation Research
Grant Number: H133A110006
Dates: 2011 – 2016
Contact: David Mellick (firstname.lastname@example.org or 303-789-8563)
Web Site: www.tbindsc.org
Abstract: The Traumatic Brain Injury Model Systems National Data and Statistical Center (NDSC) provides innovative technologies, training, and resources to the Traumatic Brain Injury Model Systems (TBIMS). Building upon a comprehensive system of data management, communication technologies, and operating procedures that emulate the best practices of clinical research organizations, the NDSC increases the rigor and efficiency of scientific efforts to longitudinally assess the experience of individuals with TBI and advance TBI rehabilitation. NDSC has nine project goals: (1) maintain the TBIMS National Database (NDB) providing for confidentiality, quality control, and data retrieval capabilities, using cost-effective and user-friendly technology; (2) provide training/technical assistance to TBIMS on subject retention, data collection procedures, data entry methods, appropriate use of study instruments, and monitoring data quality; (3) provide knowledge, training, and technical assistance to TBIMS on culturally appropriate methods of longitudinal data collection and participant retention; (4) provide statistical/methodological consultation to TBIMS; (5) implement a mechanism for continued follow-up data collection from defunded TBIMS; (6) collaborate with Spinal Cord Injury and Burn Data Centers and the Model Systems Knowledge Translation Center (MSKTC); (7) coordinate on research projects of mutual interest with NIDRR-funded projects; (8) involve individuals with disabilities in planning and implementing the research, training, and dissemination activities, and in evaluating its work; and (9) identify anticipated outcomes that are linked to stated grant objectives. NDSC introduces new innovations including public data access and reporting strategies; web-based data collectors training and certification system; technologies/resources to support the important work of the TBIMS committees, module studies, and special interest groups; advanced longitudinal analytic strategies, a Statistical Users Manual, and several proposed NDB analysis projects; new cultural competency resources and language translation services; collaboration with the MSKTC on a TBIMS exhibit and materials; a Technical Advisory Board; and new collaborative partnerships. The success of the project is assessed by five measurable outcome goals: (1) advance TBI rehabilitation by increasing the scientific rigor and utilization the TBIMS NDB/Modules, as measured by an increase in the annual rate of peer-reviewed journal articles that cite the TBIMS NDB/Modules as the primary source of research data; (2) maintain the TBIMS NDB/Modules using cost-effective and user-friendly technologies as measured by user acceptance of new technologies/methodologies as indicated by annual customer evaluations; (3) ensure high-quality, reliable data in the TBIMS NDB/Modules by providing comprehensive technical support as measured by center quality support visit reports and data quality reports; (4) improve data collected from NDB participants of all racial/ethnic backgrounds as measured by an increase in the follow-up rate of minorities; and (5) enhance continuity of the TBIMS NDB by developing mechanisms/strategies for following participants enrolled by defunded centers as measured by improvement of follow-up rates of TBIMS NDB participants.