2017 SubPageImage

About RHSCIR

Using standardized research protocols and data collection forms, RHSCIR tracks the experiences and outcomes of people with traumatic SCI during their journey from acute care to rehabilitation to community reintegration. Details about participants' spinal cord injuries including extent of injury and level of paralysis, recovery, and success of various treatments are among the data recorded.

Across Canada, RHSCIR is collecting comprehensive SCI data for the purpose of improving SCI care and clinical outcomes. The Registry promotes, encourages and supports the pursuit of excellence in SCI health care management.

Better outcomes for people living with SCI

The most vital and fundamental component of RHSCIR is its contributors - people with traumatic spinal cord injury. Their continued participation will determine the value and success of this registry. In the long term, the reward is clear - RHSCIR will accelerate the discovery, validation and translation of relevant treatments and practices that will increase independence and improve outcomes and quality of life for people living with SCI.

An invaluable resource for researchers and clinicians seeking to better understand SCI

The data collected in the Registry contains powerful information that will help track the effectiveness of specific treatments, practices or programs for improving functional outcomes and quality of life after SCI. As well, RHSCIR is expanding its reach internationally in order to increase the quality of data collected.

RHSCIR collects data using a powerful data collection and management platform called the Global Research Platform (GRP). This tool was developed by RHI's in-house specialized IT team and has been in use in RHSCIR-sponsored sites since November 2011; it is also used to support important new multi-centre clinical trials for SCI and other conditions.

RHSCIR provides the larger community of researchers, clinicians and health care professionals, government organizations, other funders, and industry with a powerful research and reporting tool. It promotes collaboration and research, helps partners achieve their SCI information goals, ensures data quality, and remains current with changing trends and issues in health care management.

 

 

 

SCI2

Expert-curated SCI resources for clinicians and administrators

In 2014, RHI launched a new website called SCI2 (Supporting Clinical Initiatives in Spinal Cord Injury). This website encourages front-line clinicians to become more involved in the Rick Hansen SCI Registry and provides health care administrators with valuable insights on RHSCIR participant demographics.

Covering the most critical areas in SCI care

The site includes expert-curated resources, toolkits for assessment, RHSCIR reports and more on topics that have a big impact on the lives of people with SCI.

SCI topics on the website includes neurology, pain, respiratory function, skin integrity, standing and walking, and the Spinal Cord Independence Measure (SCIM). There are also comprehensive resources on Accreditation Canada's SCI Standards and a section on sexual health after SCI.

SCI2 laptop

Accessing the site

The site is open to everyone, but for clinicians and health care administrators at a designated RHSCIR site, a username and login is required to access charting forms, message boards and RHSCIR dashboard reports - which includes information on how patients change over time and how they compare to patients across the country. 

 To learn more about SCI2, visit sci2.rickhanseninstitute.org.

History of RHSCIR

RHSCIR is largely the vision of two people: Canada's Man In Motion, Rick Hansen, and Dr. Marcel Dvorak a spine surgeon and researcher at Vancouver General Hospital and the University of British Columbia.

Rick Hansen has been a tireless advocate for spinal cord injury research since his epic two year, 40,000 km Man In Motion World Tour. When the concept of and the need for a Canadian spinal cord injury registry was promoted to him by Dr. Dvorak, Rick began championing the idea and provided funding through the Rick Hansen Foundation.

In 2004, through Rick and Dr. Dvorak’s efforts, RHSCIR was established with a significant investment from Health Canada. In 2008, RHSCIR became a program of the Rick Hansen Institute.

 


RHSCIR trials

Randomized clinical trials are expensive and lengthy, and they often exclude a participating institution from exploring other promising avenues. Sometimes there are tremendous variations in the performance of the procedure or in the techniques that are applied at different sites in a multi-centre clinical trial — particularly in surgical interventions. These variations cannot be controlled in a randomized clinical trial. An observational study, on the other hand, will give better information on the real world effectiveness of a specific procedure or technique.

When it comes to SCI in particular, there is general agreement today that differences in acute care approaches—for example, time to surgery and stabilization of an injury—seem to make a difference in long term outcomes. We believe there is no better way of assessing the benefits or adverse effects of different acute strategies than by using a registry, such as the Rick Hansen SCI Registry.

Many people take for granted that the best evidence of the effectiveness of a particular treatment can be provided by a clinical trial. In some cases, this is no doubt true. However, an increasing number of experts believe that positive or adverse effects of various treatments or interventions can in many cases be better assessed by comprehensive cohort studies with high quality follow-up; the type of scrutiny that is possible within an empowered registry. At the same time, a registry allows researchers and clinicians to gain important statistical knowledge and discover best practices for diagnosis and determining outcomes and supports the management and staffing of hospital spinal cord injury programs.

 

 

RHSCIR Sites

The Rick Hansen SCI Registry is active in every province, with partners at almost all major Canadian SCI trauma and rehabilitation centres collecting patient data.

Here is a listing of the participating institutions and their principal investigators/site leaders:

Vancouver, BC

Vancouver General Hospital (Acute Lead: Dr. Marcel Dvorak)

> GF Strong Rehabilitation Centre (Rehab Lead: Dr. Jennifer Yao)

Edmonton, AB

Royal Alexandra Hospital (Acute Lead: Dr. Richard Fox)

University of Alberta Hospital (Acute Lead: Dr. Richard Fox)

> Glenrose Rehabilitation Hospital (Rehab Lead: Dr. Rebecca Charbonneau)

Calgary, AB

Foothills Medical Centre (Acute Lead: Dr. Steve Casha; Rehab Lead: Dr. Chester Ho)

Saskatoon, SK

Royal University Hospital (Acute Lead: Dr. Daryl Fourney)

Saskatoon City Hospital (Rehab Lead: Dr. Gary Linassi)

Winnipeg, MB

Winnipeg Health Sciences Centre (Acute & Rehab Lead: Dr. Karen Ethans)

Toronto, ON

St. Michael's Hospital (Acute Lead: Dr. Henry Ahn)

Sunnybrook Health Sciences Centre (Acute Lead:Dr. Michael Ford)

Toronto Western Hospital (Acute Lead: Dr. Michael Fehlings)

Toronto Rehabilitation Institute - Lyndhurst Centre (Rehab Lead: Dr. Cathy Craven)

Hamilton, ON

Hamilton General Hospital (Acute Lead: Dr. Brian Drew)

Hamilton Regional Rehabilitation Centre (Rehab Lead: Dr. Brian Drew)

London, ON

University Hospital (Acute Lead: Dr. Chris Bailey)

Victoria Hospital (Acute Lead: Dr. Chris Bailey)

Parkwood Hospital (Rehab Lead: Dr. Dalton Wolfe)

Ottawa, ON

Ottawa General Hospital (Acute Lead: Dr. Eve Tsai)

The Rehabilitation Centre (Rehab Lead: Dr. Eve Tsai)

Quebec, QC

Hôpital de l'Enfant-Jésus (Acute Lead: Dr. Jérôme Paquet)

Institut de réadaption en déficience physique de Québec (Rehab Lead: Dr. Laurent Bouyer)

Montreal, QC 

Hôpital du Sacré-Cœur de Montréal (Acute Lead: Jean-Marc Mac-Thiong)

Center de réadaptation Lucie-Bruneau (CRLB) and l'Institut deréadaptation Gingras-Lindsay-de-Montréal Rehabilitation Institute (IRGLM) (Rehab Lead: Louise Poissant)

Halifax, NS

Queen Elizabeth II Health Sciences Centre (Acute Lead: Dr. Sean Christie) 

Nova Scotia Rehabilitation Centre (Rehab Lead: Dr. Christine Short)

Saint John, NB

Saint John Regional Hospital
(Acute Lead: Dr. Najmedden Attabib is on sabbatical, Dr. George Kolyvas is the interim PI)

Fredericton, NB

Stan Cassidy Centre for Rehabilitation (Rehab Lead: Dr. Colleen O'Connell)

St. John's, NL

General Hospital - Health Sciences Centre (Acute Lead: Dr. Andre Englebrecht)

L.A. Miller Rehabilitation Centre (Rehab Lead: Dr. Andre Englebrecht)

end faq

 

 

 

Privacy & Technology

RHSCIR is achieving a “gold standard” of privacy and security protection for data holdings. Our data collection and management policies and procedures respect and abide by all legal requirements across Canada, international data protection standards, and privacy and security best practices.

It is important to stress that the data provided to researchers does not identify specific individuals in RHSCIR. The data participants provide are stripped of all personal and identifying information, including personal contact information, before being provided to researchers who access the data. However, it is also important to note that RHSCIR extends its privacy gold standard to all information that it collects and stores, including information that does identify participants personally.

Data collection and flow

A successful registry has several components—a centralized database where all information is stored, multiple locations where data is collected, and clear rules for collecting, sharing and accessing the data. RHSCIR bridges provincial and health region borders to collect data in all major Canadian spinal cord injury trauma and rehabilitation centres. These institutions collect data from participants at all points during their journey through the care continuum, from acute care to community integration.

Data usage

Researchers and clinicians, along with health care managers and administrators, are anticipated to be the primary users and beneficiaries of the data collected. We expect that they will request usage of the data for a variety of purposes:

> Generate and test hypotheses (i.e. determine correlations, observational studies)

Resource for clinical trials - evidence-based practice

Quality management (organizational, performance, and clinical outcome)

Communication tool

Program planning

Policy development

Who has access to individual data held at RHSCIR?

IMG 6827

Only a limited number of RHSCIR personnel have access to individual SCI data. Access is restricted to those personnel who need the data to carry out their job at RHSCIR. For example, some RHSCIR personnel may have access to data obtained from sponsored sites for data management purposes (e.g. to create de-identified sets of data for research) and to ensure participant information is complete and accurate. RHSCIR monitors and reviews its personnel’s access to data on a regular basis to ensure it remains appropriate.
 
RHSCIR may also share a sample of de-identified data with researchers that have a scientifically and ethically approved research proposal in place to further SCI translational research. RHSCIR requires these researchers to undergo a rigorous research access request and review process before they can receive access to data. This process is outlined in the Registry’s Data Use and Disclosure Policy (available upon request). This policy ensures that any access to SCI data by researchers follows the RHSCIR's “gold standard” for privacy and security protection.
 
In addition, RHSCIR does not disclose your SCI data to any unaffiliated third party, except if required or authorized by law.

How is the data captured?

The Registry collects data on a powerful platform called the Global Research Platform (GRP) was developed by the Rick Hansen Institute's in-house specialized IT team. It has been in use in RHSCIR sites since November 2011.

This platform allows participating sites to efficiently capture data using web-based forms that incorporate RHSCIR dataset. These include international spinal cord injury standards such as the International Standards for Neurological Classification for Spinal Cord Injury (ISNCSCI) - the international best practice for classifying neurological impairment. 
 
In addition to RHSCIR, GRP is also be used as a collection tool for multi-centre clinical trials and other spine-related studies. Click here to learn more about the Global Research Platform.
 

Simplifying the process of coding very complex forms, and making them available online, is the overall goal of the GRP. Entering data in the hospitals will become a much more logical process, as best practices in data flow, usability and human interaction have been incorporated in the development. The ability for researchers to use local RHSCIR data immediately, along with the prospect of data being collected in real time using state-of-the-art security and privacy protocols, are other important features of the platform.