Foreign entities are not eligible to compete for, or receive, awards made under this announcement. Faith-based and community organizations that meet the eligibility requirements are eligible to receive awards under this funding opportunity announcement.
It is estimated that the number of Americans living with traumatic spinal cord injury (SCI) is approximately 294,000 people, with a range from 250,000 to 368,000, with an incidence of approximately 17,800 new cases each year (NSCISC, 2020).
NIDILRR supports a variety of research projects that focus on the needs of people with SCI. These projects include the SCI Model System Centers funded through NIDILRR's Model Systems Program. The SCI Model System Centers establish and carry out innovative projects for the delivery, demonstration, and evaluation of comprehensive medical, vocational, and other rehabilitation services for people with SCI.
The SCI Model System Centers have developed a national, longitudinal database that contains information on approximately 49,743 people injured since 1973. The SCI Model Systems National Database is the world’s most extensive source of information available about the characteristics and life course of people with SCI. The National SCI Model Systems Database contains a sample that is largely representative of the national population of patients receiving inpatient rehabilitation for new onset of traumatic SCI (Cuthbert J, Charlifue S, Chen D et al., 2014). The National SCI Model Systems Database also can be used to examine specific outcomes of SCI including community based outcomes. NIDILRR seeks to continue and build upon this important source of data by funding a National Data and Statistical Center for the SCI Model Systems (National SCI Model Systems Data Center) that will maintain the National SCI Model Systems Database and improve the quality of information that is entered into it. Further technical information about the SCIMS database can be found at the following website: https://www.nscisc.uab.edu/Public_Pages/Database.
The National SCI Model Systems Database is a collaborative project with participation by all of the SCI Model System Centers (there are currently 14 centers). The data for the National SCI Model Systems Database are collected by the SCI Model System Centers. The Directors of the SCI Model System Centers, in consultation with NIDILRR, determine the parameters of the National SCI Model Systems Database, including the number and type of variables to be examined and the criteria for including Model Systems patients in the database.
To maximize the external validity of findings from the National SCI Model Systems Database, the SCI Model System Centers must achieve and maintain high rates of retention and successful follow-up with database participants. Accordingly, the central role of the National SCI Model Systems Data Center will be to work with SCI Model System Centers to increase follow-up rates and to ensure data quality.
Since the creation of the National SCI Model Systems Database more than 50 years ago, a substantial proportion of database participants has been from racial and ethnic minority populations, reflecting the urban location of many of the SCI Model System Centers. The racial/ethnic diversity of the SCI Model Systems population creates a vital technical assistance role for the National SCI Model Systems Data Center. The National SCI Model Systems Data Center will work with the SCI Model System Centers to ensure that the data collected from these populations are of high quality and that the data collection procedures used reflect sufficient knowledge about the cultural backgrounds of patient populations and research participants.
Cuthbert, J., Charlifue, S., Chen, D., Deutsch, A., & Dijkers, M. (2014). Generalizability of Spinal Cord Injury Model Systems data 2001-2010. J Spinal Cord Med, 37, 438-9.
National Spinal Cord Injury Statistical Center (2020). Facts and Figures at a Glance. Birmingham, AL: University of Alabama at Birmingham.
Priority--Spinal Cord Injury (SCI) Model Systems National Data and Statistical Center:
The Administrator of the Administration for Community Living establishes a priority for the funding of a SCI Model Systems National Data and Statistical Center that advances medical rehabilitation by increasing the rigor and efficiency of scientific efforts to longitudinally assess the experience of people with SCI. To meet this priority, the SCI Model Systems National Data and Statistical Center's research and technical assistance must be designed to contribute to the following outcomes:
Maintenance of a national longitudinal database for data submitted by each of the SCI Model Systems Centers (SCI Model Systems Database). This database must provide for confidentiality, quality control, and data-retrieval capabilities, using cost-effective and user-friendly technology.
High-quality, reliable data in the SCI Model Systems Database. The National SCI Model Systems Data Center must contribute to this outcome by providing training and technical assistance to SCI Model Systems Centers on subject retention and data collection procedures, data entry methods, and appropriate use of study instruments, and by monitoring the quality of the data submitted by the SCI Model Systems Centers.
High-quality data collected from database participants of all racial/ethnic backgrounds. The National SCI Model Systems Data Center must contribute to this outcome by providing knowledge, training, and technical assistance to the SCI Model Systems Centers on culturally appropriate methods of longitudinal data collection and participant retention.
Rigorous research conducted by SCI Model Systems Centers and all investigators who are analyzing data from the SCI Model Systems Database. The National SCI Model Systems Data Center must contribute to this outcome by making statistical and other methodological consultation available for research projects that use the SCI Model Systems Database, as well as center-specific and collaborative projects of the SCI Model Systems Program.
Enhanced continuity of the SCI Model Systems Database. The National SCI Model Systems Data Center must contribute to this outcome by establishing, implementing and providing resources and mechanisms for continued collection of follow-up data from people who were enrolled by SCI Model Systems Centers that no longer receive Model Systems Program funding. These resources and mechanisms must focus on continued collection of data from at least three SCI Model Systems Centers that were previously funded, but that have not received subsequent funding under the Model Systems Program.
Improved quality and efficiency of the SCI Model Systems Database operations through collaboration with the National Traumatic Brain Injury Model Systems Data Center, the National Burn Model Systems Data Center, and the Model Systems Knowledge Translation Center (MSKTC).
Increased use and impact of the SCI Model Systems Database on the population of people with SCI through continued and enhanced collaborations that promote synergy with other SCI research initiatives.
Improved outcomes of the SCIMS through managing data, if requested, that is generated by module projects and collaborative projects that SCIMS centers are carrying out in fulfillment of their grant requirements.
Improved performance of the SCIMS by maintaining and working with the SCIMS centers to develop and revise standard operating procedures that provide guidance for SCIMS operations.
Increased public accessibility of SCI data, ensuring the confidentiality and integrity of the dataset as well as promoting the use of the data to advance knowledge, in consultation with NIDILRR.
Ongoing access to the tools and resources of the SCI Model Systems Data Center. The SCI Model Systems Data Center must contribute to this outcome by cooperating and collaborating with the previous SCI Model Systems Data Center in order to ensure the smooth and orderly transition to a new Data Center grantee, if necessary. The new grantee, if applicable, must coordinate with NIDILRR and the previous grantee to ensure that SCI Model System Centers maintain access to Data Center tools and resources during the brief transition period.