title: Harmonization of Databases: A Step for Advancing the Knowledge About Spinal Cord Injury.
abstract: The objectives of this article are to (1) provide an overview of existing spinal cord injury (SCI) clinical research databases-their purposes, characteristics, and accessibility to users; and (2) present a vision for future collaborations required for cross-cutting research in SCI. This vision highlights the need for validated and relevant data for longitudinal clinical trials and observational and epidemiologic SCI-related studies. Three existing SCI clinical research databases/registries are reviewed and summarized with regard to current formats, collection methods, and uses, including major strengths and weaknesses. Efforts to provide a uniform approach to data collection are also reviewed. The databases reviewed offer different approaches to capture important clinical information on SCI. They vary on size, purpose, data points, inclusion of standard outcomes, and technical requirements. Each presents with a set of limitations including lack of population data and lack of a common platform for data comparisons and exchanges. It is clear that numerous issues need to be considered when planning to establish common ways of collecting data through data sets or patient registries, ranging from a carefully crafted implementation plan that lists purposes, cost, resources required, and policies to guide such development to establishing a framework for dissemination of data and findings. For the present, taking advantage of the vast but different data already collected over many decades may require a variety of statistical skills and epidemiologic techniques. Ultimately, our ability to speak the same language with regard to variables and assessment tools will facilitate international collaborations and enhance comparability, data pooling, and the ability to generalize findings to a broader population.
authors.affiliation: Rocky Mountain Regional Spinal Injury System, Craig Hospital, Englewood, CO. Electronic address: susie@craighospital.org.
authors.forename: Susan
authors.initials: S
authors.lastname: Charlifue
authors.affiliation: University of Michigan Spinal Cord Injury Model System, Department of Physical Medicine and Rehabilitation, Ann Arbor, MI.
authors.forename: Denise
authors.initials: D
authors.lastname: Tate
authors.affiliation: Clinic of Spinal Cord Injuries, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark.
authors.forename: Fin
authors.initials: F
authors.lastname: Biering-Sorensen
authors.affiliation: Veterans Administration Spinal Cord Injury and Disorder Services, Puget Sound Veterans Administration Medical Center, Seattle, WA; Department of Rehabilitation Medicine, University of Washington, Seattle, WA.
authors.forename: Stephen
authors.initials: S
authors.lastname: Burns
authors.affiliation: Department of Physical Medicine and Rehabilitation, University of Alabama at Birmingham, Birmingham, AL.
authors.forename: Yuying
authors.initials: Y
authors.lastname: Chen
authors.affiliation: Veterans Administration Long Beach Healthcare System, Spinal Cord Injury Center, Long Beach, CA.
authors.forename: Sophia
authors.initials: S
authors.lastname: Chun
authors.affiliation: National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, MD.
authors.forename: Lyn B
authors.initials: LB
authors.lastname: Jakeman
authors.affiliation: Rocky Mountain Regional Spinal Injury System, Craig Hospital, Englewood, CO.
authors.forename: Robert G
authors.initials: RG
authors.lastname: Kowalski
authors.affiliation: Rick Hansen Institute, Vancouver, British Columbia, Canada.
authors.forename: Vanessa K
authors.initials: VK
authors.lastname: Noonan
authors.affiliation: Veterans Administration Spinal Cord Injury and Disorder Services, Puget Sound Veterans Administration Medical Center, Seattle, WA; Department of Rehabilitation Medicine, University of Washington, Seattle, WA.
authors.forename: Philip
authors.initials: P
authors.lastname: Ullrich
mesh_terms: D035843:Biomedical Research / Q000458:organization & administration* / Q000592:standards; D003469:Culture; D003625:Data Collection / Q000592:standards; D016208:Databases, Factual / Q000592:standards*; D004185:Disability Evaluation; D006801:Humans; D026741:Physical Therapy Modalities; D011057:Politics; D012042:Registries / Q000592:standards*; D012111:Residence Characteristics; D012959:Socioeconomic Factors; D013119:Spinal Cord Injuries / Q000145:classification / Q000150:complications / Q000534:rehabilitation*; D014481:United States
keywords: Database; Dataset; Rehabilitation; Spinal cord injuries