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Thirty Years of National Institute on Disability, Independent Living, and Rehabilitation Research Traumatic Brain Injury Model Systems Center Research-An Update.

ABSTRACT: The Traumatic Brain Injury Model Systems Center (TBIMSC) program was established by the National Institute on Disability, Independent Living, and Rehabilitation Research in 1987, with the goal of conducting research to improve the care and outcomes for individuals with moderate-to-severe traumatic brain injury (TBI). This article provides an update on TBIMSC research program activities since 2010 when a similar article was published. It includes (1) discussion of TBIMSC program management and infrastructure; (2) detail on the management, data quality, access, use, and knowledge translation of the TBIMSC National Database, with more than 16 000 participants with follow-up out to 25 years postinjury to date; (3) an overview of the TBIMSC site-specific studies and collaborative module research; (4) highlights of several collaborative initiatives between the TBIMSCs and other federal, advocacy, and research stakeholders; (5) an overview of the vast knowledge translation occurring through the TBIMSC program; and (6) discussion of issues that impact on the data collection methods for and contents of the TBIMSC National Database. On the occasion of the 30th anniversary of the TBIMSC program, this article highlights many of the accomplishments of this well-established, multicenter TBI research consortium.

SUBMITTER: Dijkers MP

PROVIDER: S-EPMC6408211 | biostudies-literature | 2018 Nov/Dec

REPOSITORIES: biostudies-literature

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Thirty Years of National Institute on Disability, Independent Living, and Rehabilitation Research Traumatic Brain Injury Model Systems Center Research-An Update.

Dijkers Marcel P MP Marwitz Jennifer H JH Harrison-Felix Cynthia C

The Journal of head trauma rehabilitation 20181101 6

The Traumatic Brain Injury Model Systems Center (TBIMSC) program was established by the National Institute on Disability, Independent Living, and Rehabilitation Research in 1987, with the goal of conducting research to improve the care and outcomes for individuals with moderate-to-severe traumatic brain injury (TBI). This article provides an update on TBIMSC research program activities since 2010 when a similar article was published. It includes (1) discussion of TBIMSC program management and in ...[more]

PMID: 30395041

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Project description:Objective:To conduct a descriptive analysis of the sweat test (ST), associating ST results with epidemiological data, CFTR (cystic fibrosis transmembrane conductance regulator) mutations and reasons to indicate the ST, as well as correlating sweat sodium and sweat chloride concentrations in subjects. Methods:Retrospective survey and descriptive analysis of 5,721 ST at a university referral center. Results:The inclusion of the subjects was based on clinical data related with cystic fibrosis (CF) phenotype. The samples were grouped by (i) sweat chloride concentrations (mEq/L): <30: 3,249/5,277 (61.6%); ?30 to <60: 1,326/5,277 (25.1%); ?60: 702/5,277 (13.3%) and (ii) age: (Group A--GA) 0 to <6?months; (Group B--GB) ?6?months to <18?years; (Group C--GC) ?18?years. Digestive symptoms showed higher prevalence ratio for the CF diagnosis as well as association between younger age and higher values of sweat chloride, sweat sodium, and chloride/sodium ratio. The indication of ST due to respiratory symptoms was higher in GB and associated with greater age, lower values of sweat chloride, sweat sodium, and chloride/sodium ratio. There was higher prevalence of ST with sweat chloride levels <30?mEq/L in GB, ?60?mEq/L in GC, and with borderline level in GB. There was positive correlation between sweat sodium and sweat chloride. Sweat chloride/sweat sodium and sweat sodium-sweat chloride indexes showed association with sex, reason for ST indication, and CFTR mutations. Sex alters some values presented in the ST. The number of ST/year performed before and after the newborn screening implementation was the same; however, we observed a higher number of borderlines values. A wide spectrum of CFTR mutation was found. Severe CFTR mutations and F508del/F508del genotype were associated with highest probability of ST chloride levels ?60?mEq/L, and the absence of CFTR mutations identified was associated with borderline ST and respiratory symptoms. Conclusions:ST data showed wide variability dependent on age, sex, reason for examination indication, CFTR mutations, and weight of the collected sweat sample. Sweat sodium concentration is directly correlated with sweat chloride levels and it could be used as a quality parameter.

Project description:Background: The coronavirus disease 2019 (COVID-19) has resulted in an unprecedented research response, demonstrating exceptional examples of rapid research and collaboration. There is however a need for greater coordination, with limited resources and the shifting global nature of the pandemic resulting in a proliferation of research projects underpowered and unable to achieve their aims. Methods: The UK Collaborative on Development Research (UKCDR) and Global Research Collaboration for Infectious Disease Preparedness (GloPID-R), two funder coordination groups have collaborated to develop a live database of funded research projects across the world relating to COVID-19. Drawing data continually from their members and further global funding bodies, as of 15 th January 2021 the database contains 7,778 projects, funded by 101 funders, taking place across 136 countries representing an investment of at least $3.8 billion. To our knowledge it is one of the most comprehensive databases. The database is aligned to the World Health Organisation (WHO) Global Research Roadmap: 2019 Novel Coronavirus. It is being used by the WHO, governments and multi-lateral policy makers, research funders and researchers. This living mapping review aims to supplement the database by providing an open accessible and frequently updated resource summarising the characteristics of the COVID-19 funded research portfolio. Both descriptive and thematic analysis will be presented and updated frequently to aid interpretation of the global COVID-19 funded research portfolio. Results: In this version three analysis we provide an updated detailed descriptive analysis of the database (three months after version two) and focus our thematic analysis on research gaps, research areas in need of coordination, study populations and research locations (with a focus on resource-limited countries). Conclusions: As the global funding response to COVID-19 plateaus, this living mapping review helps both funders and researchers to prioritise resources to areas where there is continued unmet research need.

Dataset Information

Thirty Years of National Institute on Disability, Independent Living, and Rehabilitation Research Traumatic Brain Injury Model Systems Center Research-An Update.

Publications

Thirty Years of National Institute on Disability, Independent Living, and Rehabilitation Research Traumatic Brain Injury Model Systems Center Research-An Update.

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