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.
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.
Authors: F Biering-Sørensen; S Alai; K Anderson; S Charlifue; Y Chen; M DeVivo; A E Flanders; L Jones; N Kleitman; A Lans; V K Noonan; J Odenkirchen; J Steeves; K Tansey; E Widerström-Noga; L B Jakeman Journal: Spinal Cord Date: 2015-02-10 Impact factor: 2.772
Authors: Vanessa K Noonan; Nancy P Thorogood; Phalgun B Joshi; Michael G Fehlings; B Catharine Craven; Gary Linassi; Daryl R Fourney; Brian K Kwon; Christopher S Bailey; Eve C Tsai; Brian M Drew; Henry Ahn; Deborah Tsui; Marcel F Dvorak Journal: Healthc Policy Date: 2013-05
Authors: Marcel W M Post; Janneke Nachtegaal; Sacha A van Langeveld; Maureen van de Graaf; Willemijn X Faber; Ellen H Roels; Coen A M van Bennekom Journal: Top Spinal Cord Inj Rehabil Date: 2018
Authors: F Biering-Sørensen; M J DeVivo; S Charlifue; Y Chen; P W New; V Noonan; M W M Post; L Vogel Journal: Spinal Cord Date: 2017-05-30 Impact factor: 2.772
Authors: Marcel F Dvorak; Vanessa K Noonan; Nader Fallah; Charles G Fisher; Carly S Rivers; Henry Ahn; Eve C Tsai; A G Linassi; Sean D Christie; Najmedden Attabib; R John Hurlbert; Daryl R Fourney; Michael G Johnson; Michael G Fehlings; Brian Drew; Christopher S Bailey; Jérôme Paquet; Stefan Parent; Andrea Townson; Chester Ho; B C Craven; Dany Gagnon; Deborah Tsui; Richard Fox; Jean-Marc Mac-Thiong; Brian K Kwon Journal: J Neurotrauma Date: 2014-07-08 Impact factor: 5.269