Posts Tagged US government research support
[ARTICLE] Thirty Years of National Institute on Disability, Independent Living, and Rehabilitation Research Traumatic Brain Injury Model Systems Center Research—An Update – Full Text
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.
THE TRAUMATIC BRAIN INJURY MODEL SYSTEMS CENTER (TBIMSC) program was established by the National Institute on Disability and Rehabilitation Research (NIDRR) (now the National Institute on Disability, Independent Living, and Rehabilitation Research—NIDILRR) in 1987, with the goal of improving healthcare (especially rehabilitation care) and outcomes for patients with moderate-to-severe traumatic brain injury (TBI), providing patient/family and healthcare professional education, and conducting research. In a 2010 article, we described the origin, activities, and accomplishments of the TBIMSCs, with a particular emphasis on the research activities.1 This year’s 30th anniversary of the TBIMSC program is an appropriate time to update the history and achievements. We focus on the research activities of the TBIMSC program, that is, the site-specific studies, collaborative studies, and longitudinal National Database (NDB), as well as on the multifaceted knowledge translation initiatives. We also provide examples of the many ways in which the infrastructure of the TBIMSC program has been leveraged in collaborations with other TBI stakeholders.
NIDILRR, the funder of much rehabilitation research in the United States, established the TBIMSC program to demonstrate the value of coordinated medical, social, and vocational services for persons with a moderate-to-severe TBI, a group that had started receiving inpatient rehabilitation facility (IRF) services in the 1970s, rather than being placed in psychiatric hospitals or other long-term care facilities.2 Grants supporting demonstration, education, and research, made for 5-year periods, initially went to 5 academic medical centers or equivalent entities; the number has been expanded over time, and for the 2017-2022 grant cycle, the number of recipients is 16 (see Table 1). The requirement of grantees that research activities are connected to a clinical program with emergency, acute neurosurgical, and inpatient and outpatient rehabilitation services is still key. The research funded involves contributions to the longitudinal NDB and collaboration on analysis of its data; site-specific research; and participation in module projects, which are shorter-term research projects undertaken by 2 or more TBIMSCs. The close cooperation between TBIMSCs on the NDB and module studies and the availability of extensive information on the rehabilitation patients at each center have been instrumental in the development of additional joint research, funded by NIDILRR, Patient-Centered Outcomes Research Institute (PCORI), National Institutes of Health (NIH), Department of Defense (DoD), Centers for Disease Control and Prevention (CDC), and other agencies. These mechanisms are described later, with recent and current projects listed.
Management of joint activities involves the project directors (PDs) (principal investigators) of all TBIMSCs and their staff, collaborating in a number of standing and ad hoc committees, which communicate in twice-yearly, face-to-face meetings in Washington, District of Columbia, through regular conference calls and dozens of listservs. NIDILRR staff participate in most meetings, offering advice or clarifying agency objectives, rules and procedures. The staff of the TBI National Data and Statistical Center (NDSC), which is separately funded by NIDILRR, similarly play key roles, participating in management of and providing support for all multicenter activities. The 5 TBIMSC program’s standing committees are Executive, Planning, Research, Data, and Knowledge Translation (KT).
Special Interest Groups (SIGs) were first developed in 2008 to allow the TBIMSCs another avenue for research collaboration, focusing on developing new research efforts between centers as well as with outside entities. SIGs can be formed at any time, focus on mutual topics of interest to TBIMSC investigators, but do not necessarily conduct research, although research may result from their deliberations. SIGs are allotted time at PDs’ meetings and must also hold regularly scheduled conference calls to ensure continued progress toward stated goals. Currently active SIGs include the following: (1) Aging with TBI and TBI in the Elderly; (2) Analytic Procedures; (3) Caregiver and Family; (4) Cultural Issues; (5) Disorders of Consciousness; (6) PCORI; (7) Sleep-Wake-Fatigue; (8) Geographic Identifiers for Data Linkages; and (9) Department of Veterans Affairs (DVA) Collaboration.
Move from the Department of Education to the Administration on Community Living
In October of 2014, NIDRR began the process of moving from the Department of Education (DoE) to the Administration on Community Living (ACL) within the Department of Health and Human Services (HHS). With the move to ACL came an increased focus on independent living, and “NIDRR” became “NIDILRR.” ACL combines the efforts of NIDILRR, the HHS Office on Disability, the Administration on Aging, and the Administration on Intellectual and Developmental Disabilities and serves as the agency responsible for increasing access to community supports, focusing on the needs of people with disabilities throughout their life span as well as those of older Americans; it also has oversight of the State Implementation and Protection and Advocacy TBI program grants.
National Data and Statistical Center
Since 2006, Craig Hospital in Englewood, Colorado, has been funded via 5-year competitive awards from NIDILRR to serve as the TBIMSC NDSC. Major initiatives over the years have included a public and private Web site to describe the NDB and facilitate the work of the TBIMSCs; a Standard Operating Procedures (SOP) Manual with a Web-based template for all TBIMSC policies and procedures; a standardized follow-up interview, built into the data entry system; mechanisms to support defunded TBIMSCs to continue data collection with those participants already enrolled in the NDB; data collector certification processes; dynamic data summary reporting for each center and for the TBIMSCs as a whole; resources for improving cultural competency in TBI research; and the introduction of many advanced statistical methodologies to analyze the wealth of NDB longitudinal data. In the current NDSC funding cycle (2016-2021), major initiatives are the standardization of data curation and data sharing to support reproducible research, as well as collaboration with the NDSCs from the Spinal Cord Injury and the Burn Model Systems Center (MSC) programs to maximize standardization where possible and promote trauma injury research.
TBI Interagency Conferences
NIDILRR and the TBIMSCs have a major role in the hosting of the TBI Federal Interagency Conferences through the efforts of the KT Committee. To date, 4 have been held in the Washington, District of Columbia, area (December 1999, March 2006, June 2011, and June 2018). The most recent one had participation from more than 30 federal agencies and institutions, including NIDILRR, CDC, DoD, DoE, DVA, Health Resources & Services Administration, and NIH. The interdisciplinary conference offers an opportunity for federal policy and research administration staff and the researchers they fund to learn about cutting-edge research and emerging evidence-based practices.
Collaboration with the DVA Polytrauma Rehabilitation Centers
In 2005, the DVA established Polytrauma Rehabilitation Centers (PRCs), which focused on TBI after this became the signature injury of the Middle-East wars. In 2008, NIDILRR and the DVA signed an interagency agreement to create a database for the PRCs, which parallels the TBIMSC NDB. The NDSC created a separate but similar Web-based data management system and provides the same training, technical, and administrative support, SOP development, and data access as is afforded to the TBIMSCs. Four PRCs began enrollment in 2010: James A. Haley Veterans Hospital, Tampa, Florida (482 participants enrolled); Minneapolis VA Medical Center (138); Hunter Holmes McGuire VA Medical Center, Richmond, Virginia (213); and VA Palo Alto Health Care System, California (165). In 2014, the South Texas Veterans Health Care System joined this initiative; it has enrolled 84 participants. The active military and veteran participants are being followed at the same postinjury time points as the TBIMSC NDB (see later).
The collaboration between the DVA PRCs and the TBIMSC program has grown well beyond the parallel databases. The DVA PRCs have representation, including voting privileges, at the biannual TBIMSC meetings, and on TBIMSC committees and SIGs, including the DVA Collaboration SIG specifically designed as a mechanism to bring TBIMSC and DVA researchers together. In this collaboration, the VA PRCs are now referred to as the VA TBIMSCs, although funding for these centers remains separate from that for the (NIDILRR) TBIMSCs. To date, DVA researchers have initiated 27 analyses of the VA PRC database, with 8 already published; 3 analyses comparing the TBIMSC NDB with PRC NDB data have been completed or are under way.3–10