@article{e889c3547b44471399ba25057579f8e5,
title = "Developing a national registry of veterans with spinal cord dysfunction: Experiences and implications",
abstract = "We describe the development of a registry of veterans with spinal cord dysfunction who have been treated within the Department of Veterans Affairs health care facilities. The registry departs from the function and structure of traditional registries by a more extensive utilization of advances in computer technology; in particular, by its reliance upon computerized record linkage and by its association with a set of computer-based clinical management and reporting tools. We discuss some of the applications of the registry to research for persons with spinal cord dysfunction as well as implications that our experiences provide for developing other registries of persons with disabilities.",
keywords = "Data base, Registry, Spinal cord dysfunction, Spinal cord injury",
author = "Greg Samsa and Helen Hoenig and John Carswell and Richard Sloane and Bovender, {Catherine Ross} and Lukas, {Carol Vandeusen} and Horner, {Ron D.}",
note = "Funding Information: We acknowledge grant support from the Health Services Research and Development Service, Department of Veterans Affairs and the Paralyzed Veterans of America. Drs. Hoenig and Horner were partially funded by the National Institute of Health, National Institute of Aging, Claude D Pepper Older Americans Center grant 5PG0AG11268. Funding Information: We gratefully acknowledge Ms. Annette Jurgelski for editorial assistance. Registry development efforts were jointly funded by the Department of Veterans Affairs and Paralyzed Veterans of America (PVA), a congressionally chartered veterans service organization dedicated to advocacy on behalf of veterans with SCD. The VA{\textquoteright}s Health Services Research and Development Service, through its Management Decision and Research Center and Durham Field Program, was responsible for registry development.",
year = "1998",
doi = "10.1038/sj.sc.3100527",
language = "English (US)",
volume = "36",
pages = "57--62",
journal = "Spinal Cord",
issn = "1362-4393",
publisher = "Springer Nature",
number = "1",
}