The roots of National Spinal Cord Injury Statistical Center (NSCISC) date back to 1970. At that time, the Rehabilitation Services Administration of the United States Department of Health Education and Welfare began to fund demonstration project at medical centers throughout the country, collectively known as the Spinal Cord Injury Model Systems (SCIMS).
As a condition of funding, the collective SCIMS needed to collect data on people with traumatic SCI. The SCIMS began collecting data in 1973 before a database was created in 1975 to study the effectiveness of SCIMS treatment programs to improve outcomes when compared to traditional care. Phoenix, Arizona managed the database until funding was terminated in 1981.
“There was no data center between 1981 and 1983,” recalls Michael DeVivo, Dr.P.H. At that time, Dr. DeVivo was early in his research career as an epidemiologist with the UAB Department of Physical Medicine and Rehabilitation. “We here at UAB started the Data Management Service in 1983, and each SCIMS agreed to pay us a monthly fee from their grant funds to serve as the data center. In 1984, the UAB SCIMS was awarded supplement federal funding as part of its grant renewal application to revive the National SCIMS Database. It stayed that way until UAB was awarded a separate grant in 2001 that formally established the National Spinal Cord Injury Statistical Center,” adds DeVivo.
Dr. DeVivo led NSCISC until his retirement in 2005 as a professor in the department. However, he still serves as a database expert and valued consultant. The database has evolved in many ways over the decades, but it remains an influential force serving as a longitudinal multicenter study of demographics and the use of services by people with traumatic SCI in the United States. “To date, 32 centers have been federally funded as an SCI Model Systems with 31 contributing data to the National SCI Database,” says Professor Yuying Chen, M.D., Ph.D., Vice Chair of PM&R Research and the NSCISC Director since Dr. DeVivo’s retirement. “The database has data on over 52,000 people with SCI who have now been followed up to 50 years after injury. This makes it the world's largest and longest active SCI research database and the world’s most extensive source of available information about the characteristics and life course of individuals with SCI. We’re very proud that we’ve been a part of this legacy,” states Chen.
The National SCIMS Database has been used to advance knowledge in research through at least 300 scientific publications. There are currently 18 SCIMS contributing data.
NSCISC is funded by a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant number 90SIMS0016). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS).