Research Newsletter - April 2011 In This IssueMessage from Dr. Marcel Dvorak, RHI Scientific DirectorBreaking News: RHI and China to work together on research and rehabilitation initiativesUpdate: The RHSCIR Study Update: Access to Care and Timing ProjectUpdate: SCI Rehabilitation E-Scan Project Just Released: Physical Activity Guidelines for Adults with SCIUpcoming: The SCI Community Survey Visit from Dr. Li JianjunSCI Conferences ICORD hosts the first International Symposium on Autonomic Dysfunctions A look ahead to ISCoS/ASIA 2011 Interdependence 2012 Save the Date Staffing Updates Dear Colleagues, As promised, what follows is a series of updates on progress and developments at the Rick Hansen Institute as we move into the final year of our current Health Canada funding agreement. For the next 12-15 months our focus is tightened on maximizing our impact in our established areas of strategic focus (restoration of function, minimizing paralysis, and secondary complications) through a handful of key projects described below. Thank you for your time and stay tuned for our next Translational Research newsletter in a few months.Sincerely,Dr. Marcel Dvorak, Scientific DirectorThe Rick Hansen Institute Breaking News: RHI and China to work together on research and rehabilitation initiatives Earlier today in Beijing, China, RHI signed agreements with the China Rehabilitation Research Center (CRRC) and the Peking University Third Hospital to strengthen cooperative SCI research and rehabilitation initiatives in China. The agreements were signed as part of the 25th anniversary celebration of Rick Hansen’s Man in Motion World Tour and will help advance the field of SCI research and contribute to the global quest for accessibility. They will also accelerate and enhance international cooperation on SCI rehabilitation and the establishment of accessible and inclusive communities. The main elements of the cooperative agreements include: shortening the discovery time for new treatment methods; developing a shared data platform and clinical trials network; and identifying best practices. To read the full news release, click here. (Image: Rick Hansen, RHI Chairman of the Board, Daryl Rock and Director of CCRC, Dr. Li Jianjun signing the MOU) In brief....As discussed in our last newsletter, RHI has transitioned from our previous role as a granting organization to becoming a “sponsor” of clinical research projects. This sponsor model will enable the Canadian and international RHI Network sites to develop into a Canadian SCI clinical trials network. As a project sponsor, the RHI Clinical Research Operations Program will help provide site investigators with internal infrastructure, which will enhance your ability to run and participate in multicentre rehabilitation and acute care clinical trials. The RHI Research Program has two areas of focus over the next year. The first will be to support the planning and implementation of the RHI-sponsored studies/projects including multiple analyses of the prospectively collected RHSCIR data and clinical trials such as CAMPER and Minocycline. The second will be to support other related RHI research activities; particularly those aligned with Best Practice Implementation (BPI) to ensure the evidence will ultimately improve care for people with SCI. Building on the recent success with BPI initiatives (such as Actionable Nuggets, Accreditation Canada) priorities for the coming year will be focused on executing initiatives that lead to behavioural changes to improve care and treatment of people with SCI. The BPI Program has 2 key objectives over the next year: to implement best practices which will reduce severity of secondary complications; and leverage the Knowledge Mobilization Network (KMN) in implementing best practices and clinical practices guidelines. Update: The Rick Hansen Spinal Cord Injury Registry (RHSCIR) Study Working with partners in SCI health care and research across Canada, the RHSCIR Study collects, manages and analyzes important data from Canadians with spinal cord injuries.The RHSCIR study now includes 27 actively participating facilities with 4 more due to come on board in the next few months, representing both Newfoundland and New Brunswick. This has led to increased monthly enrolment and more SCI data being added to the RHSCIR database, which is currently undergoing a data cleaning and quality improvement process. The sites are also preparing for their first monitoring visits this spring, with most of them to take place in April and May. These supportive monitoring visits are being conducted in order to review regulatory compliance, bolster the adoption of RHI’s privacy and security policies, and to work with site personnel to review the quality of the data that is being collected. The site visits have provided the opportunity to learn more about each individual site’s operations and to work cooperatively with the coordinators to help make RHSCIR both a local and a national research success.A review of the current RHSCIR dataset is underway, with the first phase targeted at implementing changes identified by the rehabilitation community as gaps in our current dataset, as well as making improvements to enrich the quality of the data currently being collected. In conjunction with RHI participation at the ASIA-ISCoS meeting in June in Washington, DC, we are planning a meeting of RHSCIR rehab investigators to discuss the proposed changes to the RHSCIR dataset and to get consensus to move forward with a dataset change. The proposed changes to the RHSCIR dataset will also be discussed with the RHSCIR acute care investigators to ensure consensus is reached on changes prior to implementation. A meeting to discuss this is scheduled to take place this fall and more information will be available in the coming months.In addition, our newly revised protocol and consent form template will be launched shortly to introduce the new web-based electronic data capture system (called the Global Research Platform, or GRP) that has been developed for use with RHSCIR and other future SCI studies. Easier to use data capture forms, simpler data entry, and real-time data transfer are just a few of the many benefits of this new system. The RHSCIR team is looking forward to the year ahead!For more information on the RHSCIR Study, please contact Jennifer Zander, RHSCIR Project Manager Update: The Access to Care and Timing Project (ACT)The ACT project is a study that aims to understand the interaction of the clinical and administrative processes that affect the care for persons sustaining a traumatic SCI. A computer simulation model has been developed to examine the effect of implementing specific policy initiatives and clinical practice guidelines related to the ‘setting’ (the environment where the patient is treated) and the ‘timing of interventions’ (how quickly the patient is treated) on system and patient outcomes. It is anticipated that results from this study will describe the delivery of care for persons with acute traumatic SCI in 7 Canadian provinces.There are 26 acute and rehab facilities in Canada participating in the ACT project and the ACT Project Team is currently developing high-level diagrams or maps describing the basic health care delivery system for traumatic SCI. This initial mapping phase will be completed in Fall 2011. For a subset of sites that have demonstrated unique aspects of care delivery, more detailed process maps and health care delivery simulation models for traumatic SCI will be developed using information from various sources such as clinical SCI data from the RHSCIR study. This more detailed mapping will be completed in the Summer of 2012. The Project Team has also been focusing on the development of a health progression model (HPM) for SCI which will estimate the long term costs and quality of life for persons with traumatic SCI over a person's lifetime. This HPM will integrate with the health care delivery simulation model in order to evaluate the effects of implementing policy initiatives and clinical practice guidelines on not only the system, but also on long-term patient health and satisfaction.Results of the work done to date by the ACT Project Team have recently been presented at the Canadian Spine Society meeting (Quebec City, March 2011) and will also be disseminated at upcoming SCI conferences such as the combined ASIA-ISCoS International Conference on Spinal Cord Medicine and Rehabilitation (Washington DC, June 2011). The ACT Project is being led by Principal Investigator, Dr. Marcel Dvorak (Vancouver General Hospital), and Co-Investigators, Dr. Michael Fehlings (Toronto Western Hospital), Dr. Anthony Burns (Toronto Rehab Institute, Lyndhurst Centre), and Vanessa Noonan (Rick Hansen Institute). For more information on the ACT Project, please contact Lesley Soril, Project Manager, Access to Care & Timing (ACT) Update: The SCI Rehabilitation E-Scan ProjectThe SCI Rehabilitation E-Scan is a project that is developing an atlas of pan-Canadian SCI rehabilitation service delivery. This information provides a baseline of current care delivery in RHSCIR rehabilitation centres that will be available to all participating sites. The E-Scan is in the final phase of data collection with all 13 RHSCIR rehabilitation centres participating. The Project Team has begun preliminary work on the atlas, which is expected to be completed by March 2012.The E-Scan is being led by Principal Investigator, Dalton Wolfe (Lawson Health Research Institute), and Co-Investigators, Dr. Cathy Craven (Toronto Rehabilitation Institute), Jane Hsieh (Lawson Health Research Institute), Vanessa Noonan (Rick Hansen Institute), Molly Verrier (Toronto Rehabilitation Institute), and Amir Rasheed (Rick Hansen Institute).For more information on the SCI Rehabilitation E-Scan, please contact Amri Rasheed, Director of Best Practices and Implementation and Project Manager for E-Scan back to top Just Released! Physical Activity Guidelines for Adults with SCIOn March 17th, 2011, McMaster University, the Rick Hansen Institute and SCI Action Canada jointly released the new Physical Activity Guidelines for Adults with SCI. The Physical Activity Guidelines for Adults with SCI are the first evidence-based guidelines to be developed specifically to support people with SCI in living healthier, more active lives. They state that to improve fitness, healthy adults with SCI should participate in at least 20 minutes of moderate-vigorous aerobic activity two times per week, as well as strength training exercises two times per week. The Guidelines were developed by an expert panel from across Canada, led by researchers at McMaster University, and followed a rigorous and internationally accepted, consensus approach to guideline development. This resource was developed to help guide and support exercise programmers, clinicians, and people with SCI in achieving better overall health and physical fitness, while reducing the likelihood and severity of secondary complications, which are often linked to physical inactivity. The Guidelines are available for download online at www.sciactioncanada.ca/guidelines.For more information on the Physical Activity Guidelines for Adults with SCI, please contact Amir Rasheed, Director of Best Practices and Implementation Click here to read the news release. View the CBC National story on the Guidelines. Upcoming: The SCI Community Survey The SCI Community Survey is the largest study of its kind to ever be done in Canada and once completed, it will become the largest repository of SCI data related to people living in the community. The Survey was designed to identify the most critical needs of people with spinal cord injury, and then examine the relationship among these needs with: access/barriers to service utilization outcomes (e.g. secondary complications, participation, quality of life) personal and environmental factors (e.g. age, gender, injury severity or location of residence, unemployment rate) The SCI Community Survey is the first study to examine whether or not those identified needs are actually being met by Canada’s health care and social services systems. By participating in the SCI Community Survey, people with SCI have a unique opportunity to help shape how the Canadian health and social services system could better meet their needs. This survey is being conducted by a professional research firm under the supervision of a team of Canadian researchers led by Dr. Luc Noreau of Université Laval and is supported by the Rick Hansen Institute. Expected to launch in April, 2011, and run for 6-8 months, the Survey aims to collect input from more than 3,000 Canadians with SCI. For more information about the SCI Community Survey, please contact Marie-Eve Drouin, Research Co-ordinator Visit from Dr. Li Jianjun In early March, the Rick Hansen Institute welcomed Dr. Li Jianjun for a week-long visit in Vancouver. Dr. Li is as an influential figure and key opinion leader in SCI rehabilitation research in China and is the Director of the China Rehabilitation Research Centre (CRRC) in Beijing, the largest state-owned institute in China affiliated with the China Disabled Person’s Federation and it is the designated national rehabilitation center for all work-related injuries. Key areas of practice and research at CRRC include hemiplegia, SCI, orthopedics and amputation, neurology and neuro rehabilitation and a smaller pediatrics program focused on cerebral palsy. Dr. Li’s visit concluded with a lecture at the Blusson Spinal Cord Centre, speaking to researchers, students and members of the SCI community about the CRRC and the state of SCI in China.Collaboration with the international SCI community is a vital stepping stone towards advancing research and best practices. RHI hopes to collaborate with the CRRC in the areas of researcher/clinician exchange, sub-acute stage research and certain secondary complications. Dr. Li is currently assisting Dr. Andrei Krassioukov in the development of the rehabilitation theme for the research program of Interdependence 2012, an international conference with a focus on creating accessible communities and furthering spinal cord injury research for a cure. back to top SCI Conferences ICORD hosts the first International Symposium on Autonomic Dysfunctions in VancouverThis past February, ICORD Researcher and Associate Director, Dr Andrei Krassioukov hosted over one hundred and twenty participants at the Blusson Spinal Cord Centre for a one day international symposium on autonomic dysfunctions (AD) after spinal cord injury. Motor and sensory abnormalities have been the main focus of SCI related research for many years. However, conditions relating to autonomic dysfunction often limit the activities of daily living, participation in sports and frequently result in life-threatening medical emergencies for individuals with SCI. Guest presenters from across Canada, USA and Denmark addressed the latest basic science and clinical evidence in the field and explored themes such as disordered cardiovascular control, bowel, bladder and sexual dysfunctions, among others. Presenters included Dr. Fin Biering-Sorensen, Medical Director at Clinic for Spinal Cord Injuries at University of Copenhagen; Lawrence P. Schramm, Johns Hopkins School of Medicine, and Dr. Susan Harkema of the Department of Neurological Surgery at the University of Louisville and Director of NeuroRecovery Network (NRN). One of the highlights was a frank and insightful round table discussion about the real life experience of autonomic dysfunction with Teri Thorson, a Paralympian and new mother; Brad Zdanivsky, quadriplegic rock climber and recent Langara College graduate; and Dr Jaimie Borisoff, a Biomedical Engineering Scientist at the BC Institute of Technology and ICORD.Despite the creation of the Autonomic Standards in 2009 by ASIA and ISCoS, opportunities such as this Symposium play a critical role in sharing expertise and help to pave the way for standardizing clinical tools for evaluating these complex and still very poorly understood conditions. A look ahead to ASIA/ ISCoS 2011 – June 4th-8th, Washington, DCThis year, RHI will have a strong presence at the combined ASIA/ISCoS meeting in Washington, DC, in June as a platinum sponsor, and we hope that we will see you there. Researchers from RHI will be presenting numerous posters, giving podium presentations, and delivering a course on the Access to Care and Timing (ACT). If you will be presenting an RHI funded project at ASIA/ISCoS please let us know as we would like to promote your presentation at our booth in the conference trade show.As we get closer to the conference we will let you know what activities and events RHI has planned for that week. Stay tuned!For information on RHI’s participation at ASIA/ISCoS, please contact Gabrielle Nye, Marketing & Communications Specialist, Programs Interdependence 2012 - Save the DateCoinciding with the 25th anniversary of the Rick Hansen Man In Motion World Tour, Interdependence 2012 conference and exposition will advance the original goals of the Tour: creating accessible communities, and furthering spinal cord injury (SCI) research for a cure. i2012 will provide a meaningful and practical forum for experts from around the world to share best practices, lessons learned, and to set the stage for international collaboration for the next 25 years.May 15–18, 2012, Vancouver, British Columbia, Canada Visit the i2012 website back to top Staffing UpdatesIn November 2010, RHI welcomed Erin Cherban to our team as the new Director, Clinical Research Operations. Erin is experienced in building networks that can run investigator-initiated and industry-sponsored clinical trials. She will provide functional management of our RHI-sponsored studies and work with the RHSCIR sites to build the infrastructure required for multicentre clinical trials. For RHSCIR inquiries, please contact: General inquiries: Jennifer Zander, RHSCIR Project Manager Data related: Lydia Cartar Research related: Vanessa Noonan Clinical study related: Erin Cherban Quick links and related resources Read RHI CEO, Bill Barrable's recent interview in Healthcare Quarterly Visit our Media Room Scan our latest news coverage Tour our resources for the newly injured section Visit the Interdependence 2012 site Learn more about the 25th Anniversary of the Man In Motion World Tour Stay up-to-datePlease continue to visit the Rick Hansen Institute website and become part of the translational research program’s mailing list to keep up to date on future opportunities to partner with RHI on SCI research. Participate in knowledge mobilization to ensure best practices are identified, validated, and translated into day to day clinical practice. Help us make an impact on people living with SCI in Canada today. AcknowledgmentsThe Rick Hansen Institute would like to thank the following funders and partners: Health Canada, McMaster University, SCI Action Canada, Université Laval, ICORD, Vancouver Coastal Health, Western Economic Diversification, and the provinces of Alberta, British Columbia, Manitoba, and Ontario.