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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.

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"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.

 


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Traumatic SCI is defined as impairment of the spinal cord or cauda equina function (i.e. motor or sensory deficit) resulting from the application of an external force of any nature (e.g. blunt, penetrating, etc.) and any magnitude. It includes new neurological motor or sensory deficit secondary to surgical procedures that result in the direct application of an external force to the spinal cord or cauda equina (this does not include motor or sensory deficit related to vascular injury such as ischemia or infarction of the cord). It is also initially classified as AIS A, B, C or D or Cauda Equina (including those individuals who progress to AIS E by discharge).

Individuals with impairment of the spinal cord or cauda equina function (i.e. motor or sensory deficit) that is not caused either directly or indirectly by an external force (e.g., intervertebral disc disease, vertebral injuries in the absence of SCI or cauda equina, nerve root avulsions, and injuries to nerve roots and peripheral nerves outside the spinal canal, cancer, spinal cord vascular disease, and other non-traumatic spinal cord diseases) are not currently eligible to participate in RHSCIR.

Have more questions about SCI? Check out these frequently asked questions.