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.

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 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:

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?

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.

Participate in RHSCIR

How to participate

You may be eligible to register for the Rick Hansen Spinal Cord Injury Registry if you:

> have sustained an acute (new) traumatic SCI and

> are currently an inpatient at a participating RHSCIR-sponsored site

If you are a candidate for participation, you may be dealing with many life-changing events. As well, your participation requires some time and effort at a very difficult point in your life. We ask you to consider consenting to participate because, quite simply, you are the most vital and fundamental component of RHSCIR. Your involvement is necessary in improving our capacity to better treat people with spinal cord injuries and maximize their potential to reach the fullest recovery possible. It is important to note that eligibility is determined by the RHSCIR coordinator/care team. Please consult your local RHSCIR-sponsored site if you are interested in learning more.

Visit our section on Do you have an SCI? for information on SCI, how to get support and stay active.

After agreeing to participate in the study, a local RHSCIR representative will conduct an initial interview during your hospital stay to collect information about your health status. This interview will last approximately one hour. After you have been discharged from the hospital, you will be asked to complete follow-up reviews conducted within your community by local Registry representatives, after 1, 2, 5, and 10 years. After 10 years of participating in the RHSCIR study, you will be asked to complete follow-up reviews every 5 years. Each of the follow-up collection calls will also require approximately one hour of your time. We also ask you to update your contact information with RHSCIR coordinators as it changes to ensure that your experiences continue to be recognized.

"Ultimately, I believe RHSCIR will play an important role in finding a cure for spinal cord injury. And in the meantime, it will help people with spinal cord injury to interact effectively with the healthcare system and maximize their quality of life — at work, at home, and at play...from my own experiences, and from my conversations with so many other Canadians with a spinal cord injury, and from the many surveys we’ve conducted, we know this: people with spinal cord injuries want to be part of the solution. We want to contribute. Well, this registry gives all of us a powerful opportunity to do just that.”

- Rick Hansen

What information does RHSCIR collect and use from you?

RHSCIR collects and uses your information (SCI data) for its work in translational research. The aim of this research is to seek breakthroughs in acute care, rehabilitation, and community integration through facilitating communication, promoting best practices, and partnering with communities. The type of SCI data collected includes:

> Date of birth and gender.

> Cause, location, and date of injury.

> Admission and discharge information (movement through each care centre).

> Surgical procedures and diagnostic services required.

> Outcomes of treatment, including impact on quality of life and physical functioning.

It’s important to stress that your confidentiality is protected by strict privacy and security measures. Read more about our strict privacy protocols.

How does RHSCIR use your SCI data?

Your SCI data is transmitted to RHSCIR, where RHSCIR staff and participating researchers use it to:

> Better understand the importance of how time and specialized care may improve the treatment of spinal cord injuries.

> Support translation of promising new research into treatments and investigate ways to more effectively evaluate an individual’s functional recovery.

> Promote and monitor adoption of new knowledge and best practices across health care delivery systems (e.g. acute, rehab, and community care centres).

> Check that data collection is consistent and accurate and that tools to assess improvements in quality of life are reliable and properly administered.

> Investigate different models of delivering healthcare and find and encourage use of those that produce the best outcomes.

Rick Hansen SCI Registry

What is the Rick Hansen SCI Registry?

The Rick Hansen SCI Registry (RHSCIR) is a pan-Canadian prospective observational registry of individuals sustaining a traumatic spinal cord injury.

There are 30 facilities* – major Canadian acute care and rehabilitation hospitals – that collect patient data for the Registry. In addition, international collaborations have been established in China, New Zealand and Israel.

This registry links clinicians, researchers, and health care administrators with the goal of improving both research and clinical practice for individuals with SCI. The registry helps to facilitate the translation of research into clinical practice and to promote evidence-based practices. 

To learn more about RHSCIR, we encourage you to peruse this section using the links in the right hand column. Your comments, questions and feedback are welcome. Please contact us.

Download a PDF on RHSCIR.

RHSCIR Reports

RHSCIR Reports are detailed analyses of some of the clinical and demographic data obtained from RHSCIR. Each report, released annually, outlines observed trends in the traumatic spinal cord injury population like the age distributions, level and mechanism of injury, where people go after injury to receive treatment, the duration of their hospital stay, and secondary complication information.

View the RHSICR Community Report

View the 2017 report English | French

View the 2016 data summary, published in the Journal of Spinal Cord Medicine

Past reports: 

• 2016 Report: English | French
• 2015 Report: English | French
• 2014 Report: English | French
• 2011-2013 Report: English | French

There are over 7,000 individuals with traumatic SCI participating in the Registry. 

How many people sustain a traumatic SCI each year? What was the cause of their injury and how severe was it? What treatments result in better outcomes? What piece of equipment will have the greatest impact on a patient's recovery? Ideally, every researcher, clinician and healthcare administrator would have access to this type of information. Questions like these are the reason that the Rick Hansen SCI Registry was established.

By collecting a person's demographic information (age, date of injury, sex, location, etc.) and clinical data (level and type of injury, admission and discharge dates, complications etc.), it enables researchers and healthcare providers to answer critical questions about care including evaluating how their patients are being treated and help identify how to improve SCI care at their facility. With a condition that varies as much as SCI does from person to person, data platforms and registries are one of the only ways to study the many variations and complications and outcomes of such an infrequent, high-cost medical condition across a dispersed population like Canada's. Without such research, there is no way to know how to improve care or bring new therapies into practice.

* In July 2015, the two RHSCIR rehab facilities in Montreal merged under the same administrative body: Centre intégré universitaire de santé et de services sociaux du Centre-sud de l'Île-de-Montréal (CCSMTL).