International Spinal Cord Injury Data Sets

Biering‐Sørensen, Fin; Charlifue, Susan; DeVivo, Michael J.; Noonan, Vanessa K.; Post, Manuela; Stripling, T; Wing, Peter

doi:10.1038/sj.sc.3101930

Cited by 150 publications

(132 citation statements)

References 6 publications

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“…Where possible, the data elements are aligned with the International SCI Data Sets, 8 to ensure the registry will be able to facilitate the exchange of data internationally. To prevent duplication of data collection, data are linked locally to other data sources (for example, trauma registry).…”

Section: Overview Of the National Sci Registry: Rhscirmentioning

confidence: 99%

The Rick Hansen Spinal Cord Injury Registry (RHSCIR): a national patient-registry

et al. 2011

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Study design: Development of a prospective patient registry. Objective: To develop a patient registry for persons with traumatic spinal cord injuries (SCI), which can be used to answer research questions and improve patient outcomes. Setting: Nine provinces in Canada. Methods: The Rick Hansen Spinal Cord Injury Registry (RHSCIR) is part of the Translational Research Program of the Rick Hansen Institute. The launch of RHSCIR in 2004 heralded the initiation of the first nation-wide SCI patient registry within Canada. Currently, RHSCIR is being implemented in 14 cities located in 9 provinces, and there are over 1500 individuals who have sustained an acute traumatic SCI registered to date. Data are captured from the pre-hospital, acute and rehabilitation phases of care, and participants are followed in the community at 1, 2, 5 and then every 5 years post-injury. Results: During the development of RHSCIR, there were many challenges that were overcome in selecting data elements, establishing the governance structure, and creating a patient privacy and confidentiality framework across multiple provincial jurisdictions. The benefits of implementing a national registry are now being realized. The collection of an internationally standardized set of clinical information is helping inform clinicians of beneficial interventions and encouraging a shift towards evidence-based practices. Furthermore, through RHSCIR, a network is forming amongst SCI clinicians and researchers, which is fostering new collaborations and the launch of multi-center clinical trials. Conclusions: For networks that are establishing SCI registries, the experiences and lessons learned in the development of RHSCIR may provide useful insights and guidance.

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Section: Overview Of the National Sci Registry: Rhscirmentioning

confidence: 99%

The Rick Hansen Spinal Cord Injury Registry (RHSCIR): a national patient-registry

et al. 2011

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“…In accordance with the aim and vision of the International Spinal Cord Injury Data Sets, 17 the aim of this study on the International Bowel Function Basic SCI Data Set is to present a standardized format for the collection and reporting of a minimal amount of information on bowel function in daily practice. Furthermore, the Bowel Function Basic SCI Data Set will make it possible to evaluate and compare results from various published studies on bowel dysfunction after SCI.…”

Section: Introductionmentioning

confidence: 99%

International bowel function basic spinal cord injury data set

et al. 2008

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Study design: International expert working group. Objective: To develop an International Bowel Function Basic Spinal Cord Injury (SCI) Data Set presenting a standardized format for the collection and reporting of a minimal amount of information on bowel function in daily practice or in research. Setting: Working group consisting of members appointed by the American Spinal Injury Association (ASIA) and the International Spinal Cord Society (ISCoS). Methods: A draft prepared by the working group was reviewed by Executive Committee of the International SCI Standards and Data Sets, and later by ISCoS Scientific Committee and the ASIA Board. Relevant and interested scientific and professional (international) organizations and societies (approximately 40) were also invited to review the data set and it was posted on the ISCoS and ASIA websites for 3 months to allow comments and suggestions. The ISCoS Scientific Committee, Council and ASIA Board received the data set for final review and approval. Results: The International Bowel Function Basic SCI Data Set includes the following 12 items: date of data collection, gastrointestinal or anal sphincter dysfunction unrelated to SCI, surgical procedures on the gastrointestinal tract, awareness of the need to defecate, defecation method and bowel care procedures, average time required for defecation, frequency of defecation, frequency of fecal incontinence, need to wear pad or plug, medication affecting bowel function/constipating agents, oral laxatives and perianal problems. Conclusion: An International Bowel Function Basic SCI Data Set has been developed.

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“…1 The working group began by identifying minimal descriptive characteristics that would be worthwhile to know about any SCI study population. Priority was given to minimising the burden of data collection and ensuring that required data would be both meaningful and obtainable in diverse geographic and cultural environments.…”

Section: Methodsmentioning

confidence: 99%

International Spinal Cord Injury Core Data Set

et al. 2006

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Study design: Survey of expert opinion, feedback, and development of final consensus. Objective: Present the background, purpose, development process, and results for the International Spinal Cord Injury (SCI) Core Data Set. Setting: International. Methods: A committee of experts was established to select and define data elements to be included in an International SCI Core Data Set. A draft core data set was developed and disseminated to appropriate organisations for comment. All suggested revisions were considered, and a final version of the core data set was disseminated again for approval and adoption. Results: The core data set consists of 24 variables, including basic demographic characteristics, dates of admission and discharge from initial acute and rehabilitation care, cause of injury, place of discharge, presence of vertebral fractures and associated injuries, occurrence of spinal surgery, and measures of neurological and ventilator status. Conclusion: Collection of the core data set should be a basic ingredient of all future studies of SCI to facilitate accurate description of patient populations and comparison of results across published studies from around the world.

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International Spinal Cord Injury Data Sets

Cited by 150 publications

References 6 publications

The Rick Hansen Spinal Cord Injury Registry (RHSCIR): a national patient-registry

The Rick Hansen Spinal Cord Injury Registry (RHSCIR): a national patient-registry

International bowel function basic spinal cord injury data set

International Spinal Cord Injury Core Data Set

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