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

Abstract

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.

An administrative data algorithm to identify traumatic spinal cord injured patients: a validation study

“…Lesion level was determined based on the assessment made at the time of rehabilitation admission by the treating specialist. The accuracy of the SCI lesion level extraction in this study was verified using data from the Rick Hansen SCI Registry (RHSCIR), 6 which has prospective data capture of TSCI patients. 5 Of the 203 patients with an SCI that we identified, 56 were matched to their RHSCIR data record.…”

Advancing research and clinical care in the management of neuropathic pain after spinal cord injury: Key findings from a Canadian summit

“…23 This registry collects demographic data and the characteristics of an individual's pain after SCI over time, using elements of the SCI Pain Basic Dataset, to improve clinical care and outcomes. 23 Web-based and in-person clinical resources Both web-based and in-person clinical resources were identified to help clinicians and those with SCI manage pain. Web-based resources identified include the SCI Pain Navigator 24 and SCI-U.…”

International Spinal Cord Injury Core Data Set (version 2.0)—including standardization of reporting

“…1 The first version of the International SCI Core Data Set 1 has been the adopted standard for collecting and reporting minimal data on study population characteristics and has demonstrated its applicability globally. [2][3][4][5][6][7][8][9] All International SCI Data Sets are scheduled to undergo periodic review and revision when new knowledge and experience is gained to ensure continued relevance, acceptance and usage by the SCI clinical and research community. 10 The revisions agreed upon by consensus are summarized in this manuscript.…”

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, PW New 4,5,6 , V Noonan 7 , MWM Post 8,9 and L Vogel 10,11Study design: The study design includes expert opinion, feedback, revisions and final consensus. Objectives: The objective of the study was to present the new knowledge obtained since the International Spinal Cord Injury (SCI) Core Data Set (Version 1.0) published in 2006, and describe the adjustments made in Version 2.0, including standardization of data reporting.

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