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FAQ
What does TTR stand for?
TTR stands for Tumour Tissue Repository.
What is the TTR?
The TTR is a biobank that collects tissue and clinical information from people who are going to have surgery to treat a tumor, or who have had surgery to treat a tumor.
The TTR is a program of the BC Cancer Agency that is organized to collect, store and distribute samples of tumour tissue for further use in cancer research.
Where is the TTR located?
The repository is located at the BC Cancer Agency in Victoria at 2410 Lee Avenue.
Why is the TTR important?
It provides a resource to support translational research at the BC Cancer Agency, as well as across Canada and internationally.
Medical research depends on human tissue that is donated by generous individuals. Although researchers can use models of the disease such as cell lines to develop ideas and potential markers and therapies, it is essential to study human tissues. These tissue samples are used to identify bio-markers, improve treatment efficacy, identify and development of new drug therapies and to train scientists and doctors.
Who are the team members of the TTR?
The members of the team include the program director, coordinator, project nurse, research assistants, administrative assistant and programmer/analysts. The team works closely with physicians, hospital staff, and pathologists.
Who can be a donor to the TTR?
Any British Columbia patient who will be undergoing surgery to remove a tumour is a potential donor the TTR.
Who connects the donor and the TTR?
Physicians refer their patients to the TTR, or potential donors may self-refer by contacting the TTR.
What information does the TTR collect?
Information on the tissue, and clinical information that is relevant to the disease is collected.
Where is donor information stored?
The information is stored within a secure location of the BCCA Vancouver Island Center. Our database server is physically located in a newly built secure server room in BC Cancer Research Centre where physical and information access is restricted.
What is done to protect donor confidentiality?
Information that links donor identity to their samples must be maintained to enable the project to update records but no information that links the donor to the sample will be released to researchers. The TTR team operates with a commitment to privacy and follows security standards such as physically secured areas and technological measures like generating randomized link IDs,encryption and passwords.
How is tissue collected?
Tissue is collected on the day of surgery after the tissue has been removed and sent to the pathologist. Only tissue that is not needed to make a diagnosis or needed for future clinical care would be given to the TTR. No extra tissue is removed for the TTR.
What if tissue was not collected on the day of surgery and a donor wants to participate in the TTR?
A post-operative consent can be obtained.
Can a donor access specific information regarding their tissue?
No. Results obtained from research studies will not be given to the donor or entered into their medical record. However, a donor may ask questions about the type of research being done using TTR samples.
What researchers can access TTR samples and data?
Cancer researchers may apply to the TTR after obtaining approval for their study through their governing Research Ethics Board. Researchers must then submit a description of their study and the number/type of samples they require to the TTR. Submissions are evaluated for scientific merit and verification that the TTR has the necessary tissue samples required to support the study.
Is donor information sold?
No tissue or clinical information is sold and researchers who received material from the TTR must agree that no tissues will be sold or used for commercial purposes. Researchers may be charged a user fee by the TTR to cover operational costs.
What will be released to researchers?
Researchers may request basic demographic, lifestyle, diagnostic, treatment and health outcome information. Before any information is released by the TTR, all personal information is removed and an encoded identifier is assigned. Upon completion of the study, their findings will be entered back into the TTR database, resulting in continuous enrichment of the TTR resource.
Can a donor change their mind about participating after they have agreed?
Yes. Donors who consent to participate in the TTR program may withdraw at any time by contacting the TTR project nurse or director. If a donor chooses to withdraw, the TTR will destroy all remaining samples and strip its database of personal identifiers. Where samples have been shipped for research, minimal non-identifying information will be kept for scientific validation. No further samples will be distributed for research.
URL: http://www.bccrc.ca/ttr/faq.html
The BC Cancer Agency Research Centre is the research arm of the BC Cancer Agency (BCCA),
and is supported by the BC Cancer Foundation.
This page was last modified at 11:50am on March 26, 2009
© 1999-2008.
BC Cancer Agency. All rights reserved.
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