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Developing a New Model of Care for Spinal Cord Injury

This article was written by the Rick Hansen Institute and the original post can be found here

Rick Hansen SCI Registry provides a baseline for the collection of critical data in Alberta

When you hear about spinal cord injury (SCI), you often hear about the traumatic causes – for example, those sustained from serious falls or car crashes. However, of the 86,000 Canadians living with a spinal cord injury, about half of those individuals sustain their injury from “non-traumatic” causes, such as infections, tumours, neurodegenerative or congenital diseases. “Non-traumatic spinal cord injury (NTSCI) is hard to define because there can be so many different etiologies or causes,” explains Nicole McKenzie, a Project Manager and Spinal Cord Injury Research Facilitator at the Foothills Medical Centre in Calgary, Alberta. “Classifying these individuals can be difficult because they may not be seen by a specialist or if they do, be seen by multiple specialists (which makes it difficult to gather information systematically), may have a mild case that only becomes severe enough to require surgery or be identified years after they begin to experience symptoms.” Because of this, the NTSCI population has not been historically studied as often as the traumatic population. The result? “There is a huge sub-set of the SCI population that we don’t yet understand well.”

The Rick Hansen SCI Registry connection

In 2014, a diverse group of stakeholders in Alberta took the lead in addressing this gap through the Rick Hansen SCI Registry (RHSCIR). Located in acute hospital and rehabilitation facilities specializing in SCI care across the country, RHSCIR tracks the experiences and outcomes of people with traumatic SCI during their journey from acute care to rehabilitation and into the community in order to improve research and clinical practice. Participants are enrolled during their initial hospital stay and are then followed after one, two, and then every five years, with the goal of collecting information about their post-injury experiences. With over 6,700 participants enrolled in RHSCIR, it is one of the most comprehensive databases on traumatic SCI in the world. Expanding the dataset to include NTSCI would not only make the data more robust, but it would enable researchers and clinicians to better understand NTSCI and how to develop more effective treatments.

With financial support from numerous organizations including the Rick Hansen Institute, Brain Canada, Alberta Paraplegic Foundation, University of Calgary Hotchkiss Brain Institute and the University of Alberta Neuroscience & Mental Health Institute, RHSCIR-Alberta embarked on an ambitious initiative to collect data on NTSCI and re-envision a method of community follow-up that could improve upon the current model of capturing individuals’ experiences after sustaining their injuries. “This is an extremely exciting project as we are working with provincial, multidisciplinary stakeholders in spinal cord injury to establish and implement a new model of care [in Alberta] that aims to provide equitable and standardized care, regardless of geographical location,” says Dr. Chester Ho, Professor at the University of Alberta and Principal Investigator of the RHSCIR-Alberta initiative. “For the model of care work, we need to have a robust, data platform for longitudinal outcomes evaluation,” and RHSCIR-Alberta in turn, would provide an important platform in this new model of care.

In Alberta, RHSCIR has sites in Calgary (Foothills Medical Center) and Edmonton (Royal Alexandra Hospital, University of Alberta Hospital and Glenrose Rehabilitation Hospital) and the data collection, protocols and linkages to a national network of SCI experts are well-established. By building off of the national registry, RHSCIR-Alberta collects data that contributes towards national SCI research, while promoting collaboration among Alberta SCI researchers, health care administrators, clinicians and community groups. The work in Alberta will also inform the collection of longitudinal, community data and NTSCI data for the rest of Canada.

It is this spirit of collaboration that has garnered support from organizations such as Campus Alberta Neuroscience (CAN). With an aim to elevate the impact of neuroscience and mental health research, education and translation, CAN promotes and propels strategic collaborations with diverse stakeholders across Alberta. It is these collaborations that resulted in the creation of the Alberta Spinal Cord Injury Partner Committee; a research and translation team with a vested interest in supporting a new model of care that will provide better outcomes for Albertans with spinal cord injuries. RHSCIR-Alberta relies on the expertise of these important partnerships. “We’re working to advance and connect spinal cord injury research, translation, community services and clinical care to improve the lifelong experience of people with SCI,” says Dr. Grant McIntyre, Executive Director of Campus Alberta Neuroscience. “The Rick Hansen Spinal Cord Injury Registry is a key element in our goal of turning research evidence into health care solutions for Canadians with SCI.”

Identifying non-traumatic spinal cord injuries

In order to learn more about individuals with NTSCI, the RHSCIR-Alberta team began to examine existing health information. They looked at the past 10 years of health records through the Alberta Health Services data repositories. An algorithm to utilize administrative data to identify cases of NTSCI was developed in conjunction with the University of Toronto, Rick Hansen Institute and Alberta Health Services Data Analytics teams. This algorithm then generated a list of patients. Charts were reviewed by the team to confirm (or deny) whether the patients had, in fact, sustained a NTSCI. This process validated the algorithm and also refined it (you can read about the research here).

The team also looked at health records of individuals with NTSCI who went through rehabilitation in Calgary or Edmonton in the last three years. These retrospective projects do not capture everyone who has a NTSCI in Alberta, however, notes Nicole who is also RHSCIR-Alberta’s Project Manager, it is the “first large-scale project of its kind, internationally, to try to develop an algorithm to identify this population using administrative health data.”

A new approach to community follow-up

The RHSCIR-Alberta team was also interested in developing and implementing a new model for the long-term follow-up of individuals in RHSCIR by creating a “person-centred approach.”

Prior to RHSCIR-Alberta, a member of the research team would conduct follow-up interviews with participants after enrollment in RHSCIR. However, the attrition rate was high as it was often challenging to maintain contact with participants as they settled back into their lives post-injury and it was difficult for individuals to see how their data was being used. Researchers were also realizing individuals’ needs were changing over time with respect to work, family and aging, but they were not in a position to provide support if individuals identified concerns during follow-up interviews. These issues were also identified among other RHSCIR sites across the country.

The RHSCIR-Alberta team, includes members from Spinal Cord Injury Alberta (SCI Alberta), a peer-support and advocacy organization, and they quickly realized that many of the questions being asked in the community follow-up interviews were also being asked by the SCI Alberta team to the clients they support. So, the team modified the questionnaire as well as the data collection process for the follow-up interviews and as a result, are better able to address individuals’ concerns in real time, incorporate specific research interests and improve participant retention. Today, a staff member from SCI Alberta (usually a social worker) conducts interviews with participants. If any concerns are raised during the interviews, SCI Alberta staff team are able to directly handle the concerns or connect patients with the appropriate clinical supports.

Partnering with SCI Alberta was a natural fit as it enabled participants to talk to an organization that they had already developed a relationship with in the community and that was familiar with the challenges they face. It also allowed the SCI Alberta staff to develop assessment skills and create stronger relationships between researchers, clinicians and community advocates. SCI-Alberta staff underwent training in good clinical practices, privacy, data platform usage and processes for following up on identified concerns. Ultimately, according to Teren Clarke, SCI Alberta’s Executive Director, “it would also enhance the number of unique individuals that data is gathered from so that research and services can be strengthened and policies can be better informed.”

Participating in these interviews was especially enlightening, said Teren. “We were inspired by the depth of the stories people tell about life with SCI, particularly their openness when speaking about the challenges related to aging.”

“The SCI Alberta team is an essential part of our data collection that is used for research and clinical purposes,” added Dr. Ho. “This partnership is groundbreaking and is establishing a very new collaborative model with mutual respect and trust for our healthcare system.”

These RHSCIR-Alberta initiatives have provided invaluable insights at a national level that will have far-reaching impact on the type of services and access to care available for individuals with SCI. As part of RHI’s national strategy to optimize care for Canadians with SCI, going forward, RHSCIR sites across Canada will soon begin to collect data on the NTSCI population and are being encouraged to engage with local community organizations to develop partnerships for community follow-up.

Funding Available for Spinal Cord Injury Provincial Clinical Implementation Grants

The Alberta Paraplegic Foundation is providing Provincial Clinical Implementation Grants for collaborative, province–wide basic science and health research teams working in the area of spinal cord injury (SCI) in Alberta. The purpose of the SCI Provincial Clinical Implementation Grant is to provide limited short-term support of clinical implementation of evidence based treatments and best practices into SCI care provincially. The Provincial Clinical Implementation Grants will serve to bring together Alberta clinicians and researchers building upon existing strengths within the province. Proposals submitted to this program should represent unique or novel ideas with potential to improve SCI patient care and research/knowledge translation capacity among SCI clinicians and researchers in Alberta.

Funded teams will receive project funding from The Alberta Paraplegic Foundation, via the Alberta SCI Research Support Fund. A maximum of two projects will be funded at up to $20,000 CAD per project over a one to two year (12-24 month) term.

This competition is now closed.

Note: funding is also available to facilitate Alberta trainees’ participation in unique learning opportunities intended to build spinal cord injury scientific and research capacity. A maximum of $1,500 per award with a maximum total of $7,500 per funding cycle. Contact Chester Ho for more information.

Graduate Student Internship Opportunity

Campus Alberta Neuroscience (CAN) is looking for a University of Calgary graduate student in neuroscience, or a related field, for a Symposium Coordinator Internship Position. The placement will primarily involve planning and coordination support for CAN’s 6^th annual provincial neuroscience symposium, to be held in Calgary in October 2017. The placement will be part-time (10 hours/week) over approximately six months.

The position will support program development, committee activity, venue logistics, marketing and promotion, and on-site coordination. The successful candidate will attend planning committee meetings and ensure that tasks and milestones are on schedule. Finally, the successful candidate will play a key role in marketing and promotion for the symposium.

This is a unique placement that will allow the intern to gain experience in a grassroots initiative that involves a geographically-distributed team environment. The placement will help CAN in its effort to make a significant impact on Alberta’s neuroscience and mental health community.

All University of Calgary full-time graduate students who are at least one year into their programs are eligible to apply for a placement. Please see the Transformative Talent Internship Eligibility Guidelines for more information on the Faculty of Graduate Studies requirements.

To apply, please see the posting on Career Link under Faculty of Graduate Studies. If you have any questions about the position please contact Clint Westgard, Partnership Coordinator.

Applications Now Being Accepted for the Spinal Cord Injury Pilot Project Grant Competition

The Alberta Paraplegic Foundation and Campus Alberta Neuroscience are accepting research proposals from collaborative, province-wide basic science and health research teams to provide Pilot Project grants in the area of spinal cord injury (SCI) research.  The purpose of the Pilot Project Grant is to provide limited short-term support of research related to SCI in areas where preliminary data are scant or nonexistent. Research proposals submitted to this program should represent unique or novel ideas with potential to open significant new avenues of research in SCI.

Funded teams will receive project funding from The Alberta Paraplegic Foundation, via the Alberta SCI Research Support Fund and within-Alberta travel support to facilitate collaborative engagement from Campus Alberta Neuroscience. A maximum of four Pilot Projects will be funded at up to $30,000 CAD total (including all direct and indirect costs), over a one-year period.

Applications are intended to include investigation of primary spinal cord injury (i.e. SCI; spinal cord dysfunction resulting from a single diagnosis or etiology) of traumatic and non-traumatic origin.  In this target population, SCI is defined as damage to the spinal cord that causes changes in its function, either temporary or permanent. These changes translate into loss of motor, sensory, or autonomic function in parts of the body served by the spinal cord below the level of the lesion. Injuries can occur at any level of the spinal cord and can be classified as complete injury, a total loss of sensation and muscle function, or incomplete, meaning some nervous signals are able to travel past the injured area of the cord. Depending on the location and severity of damage along the spinal cord, the symptoms can vary widely, from pain, numbness to paralysis and even devastating neurologic deficits and disability.

This competition is now closed.

Applications Now Being Accepted for the Spinal Cord Injury Equipment Grant Competition

The Alberta Paraplegic Foundation and Campus Alberta Neuroscience are accepting applications for Equipment Grants from basic science and health researchers working in the area of spinal cord injury (SCI) in Alberta. The purpose of the Equipment Grant is to provide assistance with funding of equipment purchases and maintenance costs.

Funded applications will receive equipment funding from The Alberta Paraplegic Foundation, via the Alberta SCI Research Support Fund. A maximum of 4-5 equipment grants will be funded at up to $7,000 CAD per applicant, over a one-year period.

Applications are intended to request equipment funding for investigations of primary spinal cord injury (i.e. SCI; spinal cord dysfunction resulting from a single diagnosis or etiology) of traumatic and non-traumatic origin.  In this target population, SCI is defined as damage to the spinal cord that causes changes in its function, either temporary or permanent. These changes translate into loss of motor, sensory, or autonomic function in parts of the body served by the spinal cord below the level of the lesion. Injuries can occur at any level of the spinal cord and can be classified as complete injury, a total loss of sensation and muscle function, or incomplete, meaning some nervous signals are able to travel past the injured area of the cord. Depending on the location and severity of damage along the spinal cord, the symptoms can vary widely, from pain, numbness to paralysis and even devastating neurologic deficits and disability.

This competition is now closed.

Alberta MS Collaboration Seed Grant Competition

The Alberta Multiple Sclerosis Collaboration is accepting basic science and clinical research proposals from new Alberta-based investigators with a faculty appointment less than 5 years or experienced Alberta-based investigators new to MS research for seed multiple sclerosis (MS) research projects focused on neuroprotection and repair.

The Alberta MS Collaboration is a multi-stakeholder initiative supporting innovation in MS research and translation in Alberta. Current partners include the Alberta MS Network, Alberta Economic Development and Trade, Alberta Health, Campus Alberta Neuroscience, the MS Society of Canada, and Sanofi Genzyme Canada. Funding for the current competition was provided by Alberta Economic Development and Trade, Sanofi Genzyme Canada. Additionally, the Branch Out Neurological Foundation will provide funding for a project that is aligned with Branch Out Neurological Foundation objectives.

New researchers who are based in Alberta and hold a full-time, continuing faculty appointment made in the last five years may submit a proposal. As well, any researchers based in Alberta who hold a full-time, continuing faculty appointment and whose research has focused on an area other than MS may submit a proposal. A maximum of four seed projects will be funded at up to $75,000 CAD total (including all direct and indirect costs), over a one-year period.

This competition is now closed.

2 teams + $200,000 + 2 years = more MS research capacity

The University of Alberta’s Dr. Bradley Kerr (with co-principal investigator Dr. Gerlinde Metz from the University of Lethbridge) and University of Calgary’s Dr. V. Wee Yong (with co-principal investigator Dr. Olga Kovalchuk from the University of Lethbridge), have received $200,000 each over two years by the Alberta Multiple Sclerosis Collaboration (Alberta MS Collaboration).

“We’re really excited about the opportunities provided by the Collaboration and its partners,” says Dr. Yong. “This competition is helping to increase the capacity for MS research and translation in Alberta.”

The Team Grant Competition accepted basic science and health research team proposals from investigators based in Alberta for collaborative projects on multiple sclerosis (MS) focused on neuroprotection and repair. Applications were reviewed and ranked by an independent committee of MS experts from institutions outside the province of Alberta.

The Alberta MS Collaboration is a multi-stakeholder initiative supporting innovation in MS research and translation in Alberta. Current partners include the Alberta MS Network, Alberta Economic Development and Trade, Alberta Health, Campus Alberta Neuroscience, the MS Society of Canada and Sanofi Genzyme Canada. Funding for the neuroprotection and repair competition was part of the $1 million commitment provided by the Ministry of Alberta Economic Development and Trade and Sanofi Genzyme Canada.

Dementia project funding focuses on disease spread in the brain

The Alberta Prion Research Institute and the Alzheimer Society of Calgary — a partnership forged at the recent Campus Alberta Neuroscience international conference — are supporting an Alberta-led research team focusing on Alzheimer’s disease. Specifically, the team is investigating how the spread of abnormal amyloid plaques leads to decline in memory and brain activity.

Drs. Robert Sutherland (University of Lethbridge), Majid Mohajerani (University of Lethbridge) and David Westaway (University of Alberta) have received $144,000 to study the spread and functional outcomes of amyloid-ß in mice. Dr. Robert Sutherland sees the development of this model as a crucial step to advancing the study of treatments for Alzheimer’s disease. “Through the use of this model, we hope to establish a new, rapid system for evaluating new treatments for Alzheimer’s disease.”

“We are really excited about the opportunity to support a team of Alberta researchers,” says Barb Ferguson, CEO of the Alzheimer Society of Calgary. “This project will help us get closer to understanding how this disease spreads in the brain.”

The funding partnership resulted from discussions at CAN’s international conference Promoting Healthy Brain Aging and Preventing Dementia: Research and Translation (held May 24-27, 2016, in Banff, Alta.). By bringing together Alberta researchers, world-renowned experts in dementia research, and provincial and national dementia stakeholders, connections and partnerships were forged within the healthy brain aging and dementia provincial research community.

Neuro pilot flies into new partnership territory

The Universities of Calgary and Lethbridge are strengthening the Campus Alberta Neuroscience network this fall, offering an interactive shared course between the two institutions — and students are eager to take part in a groundbreaking, highly interactive initiative that breaks down barriers between campuses and enhances learning.

History, Philosophy, Society and Ethics of Neuroscience is being shared across the two sites as an initial pilot. “As far as we know, there is no course like this available in Canada, so we’re creating a unique resource for students in Alberta,” says Andrew Bulloch, course coordinator at the University of Calgary. Next year, CAN and the team of instructors hope to extend the course to Edmonton, too, to allow University of Alberta students the opportunity to take part alongside peers from other institutions.

“Sharing courses like this certainly benefits the neuroscience educational landscape in Alberta. It opens up a space for the sharing of expertise and creates an invaluable opportunity for learning that students wouldn’t be able to access otherwise,” says Bulloch. The course covers a myriad topics, including neuroethics, the discovery of the neuron and speech neuroscience. Students attend class at their home university and video technology enables them to connect with peers in real time, creating opportunities for wide-ranging discussion and to build the CAN trainee community.

Interns learn, hone skills and contribute to CAN’s impact

Two graduate students are advancing their knowledge and professional skills outside the classroom — applying their learning in a work environment and being paid for this experience alongside their studies — in internships with Campus Alberta Neuroscience. The opportunities were made possible through a partnership among partner universities’ Faculties of Graduate Studies and funding from the Government of Alberta.

Emily Lennon is taking her Master’s degree in public health at the University of Alberta. She’s working to enhance CAN’s communications activities (newsletters, announcements, social media, the website and more).

“I’m thrilled that I have this opportunity to learn about the mental health and neuroscience research community in Alberta while developing concrete skills in the communications field and pursuing a Master’s,” she says.

For his part, Pourya Karimian, an international student enrolled in the University of Alberta’s Master’s program in electrical and computer engineering, is helping to improve technology-driven accessibility to Alberta-based neuroscience research. He’s helping with the continuing refinement of CANdex by developing novel methods for quickly and accurately linking researchers with their PubMed publication list — by pressing a single button on their CANdex researcher profile.

“I like to think of myself as an adventurer,” he says. “My main goal is to take advantage of every opportunity in life to gain knowledge and experience, and I hope to achieve this in my current position as an intern with CAN.”

Successful internship programs work for organizations and students alike, and require the participation of both. CAN strives to connect neuroscience and mental health graduate students with stakeholders, the three partner universities and the broader community.

Healthy Brain Aging and Dementia Researchers Meet to Connect Nationally and Globally

The international conference, Promoting Healthy Brain Aging and Preventing Dementia: Research and Translation, brought together Alberta researchers and world-renowned experts in dementia research to discuss healthy brain aging, delaying or preventing dementia, and care services.

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University part of Alberta partnership to advance research and improve care for MS patients

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International Scholars Program Now Expanded

The Campus Alberta Neuroscience International Scholars Program (CANIS) has been expanded to include internationally recognized visiting scholars who participate in conferences or symposia, or who only visit one campus — provided there is significant engagement of the neuroscience and mental health academic community from other Alberta campuses.

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