Participate in Research
What you should know if you are considering participation in a clinical study
Deciding to participate in a research study takes careful consideration. There is the commitment and the practical issues such as transportation to factor in. However, many people who take part in SCI research report a sense of accomplishment that comes from knowing they have personally contributed to a body of knowledge that promises to result in improved quality of life for all people with SCI, and ultimately, a cure.
We would like to stress the importance of doing your due diligence prior to participating in any research study, particularly clinical trials dealing with new, untested experimental therapies.
A number of experimental therapies are being introduced into clinical practice without a valid clinical trial program being completed, leaving their safety and efficacy untested. This is a great concern to researchers, clinicians and, most importantly, people with SCI.
In order to establish a set of guidelines for the design and conduct of valid clinical trials for SCI, an expert panel of researchers and doctors with extensive scientific and clinical experience in SCI was formed in 2004. The panel, supported through the ICCP (International Campaign for Cures for spinal cord injury Paralysis), developed a set of four papers outlining the guidelines for the conduct of SCI clinical trials, which were published in the journal Spinal Cord. In addition to these peer-reviewed publications, the panel summarized these guidelines in an easy-to-read booklet which you can download from the ICORD website.
In addition, we also provide more information on stem cell treatments and activity-based neural recovery programs. We encourage you to read these sections if you are considering participating in one of these activities.
Below are some additional resources for participating in research trials. It is important that you do your due diligence before participating in any research study.
Research Listings – By Province
Last updated: 15 January 2016
> International Collaboration On Repair Discoveries
ICORD is an interdisciplinary research centre, that studies the development of effective strategies to promote functional recovery after spinal cord injury. Visit ICORD’s research studies listings if you are interested in participating in their research.
> Spinal Cord Injury - British Columbia
SCI-BC is a not-for-profit organization dedicated to helping people with spinal cord injuries, and related disabilities, adjust, adapt and thrive. SCI BC’s Infoline Service includes information about participating in research.
> Spinal Cord Injury Alberta
SCI-AB is a website detailing SCI trials in Alberta. Researchers in Edmonton and Calgary are recruiting participants for studies on acute and rehabilitation interventions, as well as treatment of secondary complications.
> University of Calgary Spine Program
The Spine Program is a multidisciplinary program dealing with the care of individuals affected by conditions and diseases of the spine and spinal cord. For more information, contact Ish Bains, Surgical/Clinical Research Associate, ish.bains[at]albertahealthservices.ca, (403) 944-4334 or visit uofcspine.ca.
> Spinal Cord Injury Ontario
SCI-Ontario is a community organization providing support and services to people with SCI in Ontario. Their website also lists research studies recruiting participants by looking up your region, or by keyword.
Health Canada, through its Clinical Trials Database, is providing to the public a listing of specific information relating to phase I, II and III clinical trials in patients. The database is managed by Health Canada and provides a source of information about Canadian clinical trials involving human pharmaceutical and biological drugs. For more information, visit hc-sc.gc.ca/dhp-mps/prodpharma/databasdonclin/index-eng.php.
Clinicaltrials.gov is a US-based website providing information about current clinical trials and research studies around the world. For more information, visit clinicaltrials.gov/.
Unite 2 Fight Paralysis is a US-based grassroots SCI non-profit organization that hosts an annual consumer-focused SCI research conference called Working2Walk. They maintain a list of global SCI Clinical Trials on their website. For more information, visit u2fp.org.
Atlantic Mobility Action Project (The Mobility Project) is a multi-disciplinary research collaboration based in Atlantic Canada, led by spinal cord researchers at Dalhousie University. Working from the molecule to the clinic to the community, Mobility Project researchers are seeking and testing new ways to preserve function after spinal cord injury, to treat and prevent pain, to optimize mobility, and to help individuals with SCI get the most out of life. For more information, visit amap.ca.
Center for Information and Study on Clinical Research Participation (CISCRP) is a first-of-its-kind nonprofit organization dedicated to educating and informing the public, patients, medical/research communities, the media, and policy makers about clinical research and the role each party plays in the process. For more information, visit ciscrp.org.
It Starts With Me is a website about clinical trials that was developed by patients and caregivers who have participated in a clinical trial or have had a loved one participate in a clinical trial and by people who work in clinical trials and research. The website tells you everything you need to know about clinical trials, things to think about or ask before you decide to participate, your rights as a person who is volunteering in a clinical trial, and has a glossary of terms for you. For more information, visit http://itstartswithme.ca/.