What is ISCIB?

The International Spinal Cord Injury Biobank (ISCIB) is a repository for biological specimens and associated data, better known as a “biobank”. Biobanks support future research studies by providing de-identified specimens and data to researchers based on their research needs, catalyzing research and eliminating the need for researchers to recruit their own participants and collect their own specimens.

Why was ISCIB established?

The Principal Investigator and Director of ISCIB, Dr. Brian Kwon, established ISCIB in 2019 to procure biospecimens from individuals who have suffered a spinal cord injury and to share them with the international research community in order to facilitate SCI research around the world. The goal was to store these valuable biospecimens and their associated clinical data in a formal biobank repository, and then allow investigators who were conducting research on the biology of the spinal cord injury to have access to biospecimens for their studies.

What is the ISCIB Executive Advisory Committee?

The ISCIB Executive Advisory Committee (EAC) is responsible for the oversight, strategic direction, and overall function of ISCIB.

What is the ISCIB Operational and Scientific Access Committee?

The ISCIB Operational and Scientific Access Committee (OSAC) is responsible for the management and operations of ISCIB.  Importantly, the OSAC is responsible for decision-making around the usage of biospecimens within ISCIB and the distribution and release of biospecimens to international researchers.

Who sponsors and supports ISCIB?

ISCIB is supported by the Rick Hansen Foundation, Praxis Spinal Cord Institute, and VGH & UBC Hospital Foundation for the work required in operating and sustaining the biobank.

Who can participate in ISCIB?

At this time, you may only be eligible to participate in ISCIB if you have sustained an acute, traumatic spinal cord injury and have been admitted to Vancouver General Hospital (VGH) for treatment, or if you are eligible and participating in another SCI research study affiliated with ISCIB.

We are currently investigating the expansion of our eligibility criteria to include the recruitment of chronic and non-traumatic SCI at VGH and other hospitals across British Columbia and Canada. ISCIB’s eligibility criteria will be updated here, and on our participate page, once it is approved by all of the required review boards and committees.

How do I participate in ISCIB?

If you meet ISCIB’s current eligibility criteria, you are interested in participating in ISCIB in the future, or you are not sure of your eligibility, please contact us.

As a participant, how is my confidentiality, privacy and data protected?

Participation in research creates a risk to loss of privacy, however, your rights to privacy are legally protected by federal and provincial laws that require safeguards to ensure that your privacy is respected. ISCIB will strive to minimize this risk in the following ways: the information will be stored in an electronic database that is located on a secure hospital network and will not be accessible outside of the network or using mobile devices; the database will be secured by user identities and passwords; access to your health care records will be limited to individuals directly involved in this project; and coded identification numbers will be used to identify all samples.  No information or records that disclose your identity will be published without your consent, nor will any information or records that disclose your identity be removed or released without your consent unless required by law.

Despite these protective measures, there is a small risk that the coded information about your donated samples may be linked back to the consent form and used to identify you.

Are there any possible risks, harms or discomforts to participating in ISCIB?

Participation in any research creates a risk to loss of privacy. There is a risk that the coded information about your donated samples may be linked back to the consent form and used to identify you, but ISCIB will strive to minimize these risks by following the privacy security and confidentiality standards set by both the University of British Columbia Clinical Research Ethics Board and the Canadian Tissue Repository Network’s Biobank Certification Program.

Incidental (Unexpected) findings and Genetic Research:
There is also a small possibility that researchers will unexpectedly discover information that, if verified, could be of importance in the future. For example, they may find that you carry an unexpected abnormality in a gene that makes you susceptible to another disease. This is called an incidental finding (discovery of an abnormality that the researchers were not looking for) and is considered “actionable” if it can be prevented or treated effectively. At the end of some ISCIB consent forms, you may be given the option to choose to have you/your next-of-kin (NOK) informed of actionable incidental findings, or you may choose not to have you/your NOK be informed of actionable incidental findings.

As a participant, what will happen to my samples and data?

ISCIB is to facilitate investigation of the cause, development, diagnosis and treatment of spinal cord injury.  Biospecimens and their associated information will be made available to researchers who are conducting research that will improve our overall understanding of the spine. The samples will be used to investigate the spine and spinal cord injuries including genetic, immunological and other biological host factors that influence occurrence, response to therapy, and outcomes, as well as act as a resource for both local and international biobank research projects.  It is impossible to know all types of research projects that will be conducted in the future, but all projects will be investigating the spine and will be approved by a research ethics board before any samples are released.

Your samples and their associated data will never be sold for profit, but there may be future biobank requests where they are used for commercial-affiliated research projects (e.g., a research project that is sponsored by, or affiliated with, a commercial entity).

As a participant, can I withdraw my consent to ISCIB?

You may withdraw from ISCIB at any time without giving reasons. If you choose to enter ISCIB and then decide to withdraw at a later time, you have the right to request the withdrawal of your information and samples collected. This request will be respected to the extent possible.

Please note, however, that there may be exceptions where the data and samples cannot be withdrawn, for example: if they have already been sent to a researcher, where the data and sample is no longer identifiable (meaning it cannot be linked in any way back to your identity), or where the data has been merged with other data. If you would like to request the withdrawal of your data and samples, please let your study doctor know, or contact us.

Who can request materials for research?

Two research user categories are recognized by ISCIB: 1) Academic‐internal (academic institutions in Canada and elsewhere); and, 2) Industry (commercial entities with or without academic affiliation).

It is impossible to know all types of research projects that will be conducted in the future, but all projects will be investigating the spine and will be approved by a research ethics board before any samples are released.

What are the benefits of participating?

Individual results of research studies using ISCIB materials will not be reported to you, your family, next-of-kin, or your physicians. The information gained from these studies will be used only for research reports and will not be communicated to your physician. Therefore, there is no direct benefit to you for participating in ISCIB. It is hoped that there will be a benefit to future patients and to society from using the information gained in this project to improve therapy and prognosis for patients with spinal cord injury, in the future.

Are there any alternatives to participating in ISCIB?

The only alternative to ISCIB is non-participation. If you choose not to participate in ISCIB, you will receive the standard of care for your condition.

How can I request materials for my research?

Please contact us to determine if ISCIB has materials that are appropriate for your specific research needs.

Where does ISCIB’s materials come from?

ISCIB’s materials come directly from individuals who have suffered a spinal cord injury (SCI) and/or their next-of-kin after obtaining informed consent for their participation, or from remnant materials that are transferred to ISCIB from another SCI research study with informed participant consent for ISCIB.

What clinical data is available for request?

All ISCIB participants have the following baseline dataset available for requests: Biological sex, Age at injury, ASIA Impairment Scale Score, Vertebral location of injury, Neurological level of injury, Injury mechanism, and Clinical diagnosis

Additional data elements may be available depending on the participant’s enrolment type (i.e., directly consented to ISCIB vs. consented to ISCIB through another SCI research study) and the location that they received treatment for their SCI.

How much does it cost to obtain ISCIB materials?

ISCIB is a not-for-profit, cost-recovery biobank. All approved ISCIB requests will be asked to cover some or all of the expenses associated with a request, including but not limited to: specimen and/or data retrieval, individual specimen costs, shipping and packing materials, and courier fees.

ISCIB will communicate these potential costs with you at the time of your request consultation.

Where is ISCIB located?

ISCIB’s central laboratory and storage facility is located at International Collaboration on Repair Discoveries (ICORD) at the Vancouver General Hospital campus in Vancouver, Canada.

How do I cite/acknowledge the use of ISCIB materials in my research?

Recipients of ISCIB materials should notify ISCIB of all publications and presentations resulting from the use of ISCIB materials before they are released publicly. These metrics are tracked for our internal ISCIB reports. 

For publications and presentations acknowledging ISCIB, the acknowledgement must include the following statement: “The authors gratefully acknowledge the International Spinal Cord Injury Biobank (ISCIB) for generously providing the human specimens used in this project.”

My question isn’t listed, how can I find more information?

Please contact us and our team will be happy to assist you.