Frequently Asked Questions
How was I selected?
At the time of consenting to your donation of blood/tissue samples to the Alberta Cancer Research Biorepository (ACRB), you indicated your willingness to be contacted regarding future research. You have satisfied the selection criteria for our research due to your residence in the Calgary area and being less than 80 years of age. You will be among approximately 200 women who will be recruited each year. A portion of the initial blood/tissue donation that you provided to the ACRB prior to your surgery will be used during this research.
Where will my samples be stored?
Biological samples and corresponding medical data for participants in the B2B Research Program will be kept by Alberta Health Services in Calgary and stored in a secure storage facility.
Who can access my information?
Your samples may be made available to researchers for use in future research. The researchers must gain appropriate ethical approval and satisfy the requirements of the B2B Research Program steering committee. As well, treatment information collected by your study doctor or your health information may be matched to your samples. None of the samples, or information pertaining to the sample, will include your name; a number will identify all samples. Thus, none of these investigators will be able to identify you. Rules of confidentiality will be strictly observed and any disclosure of information will be in accordance with the Alberta Health Information Act.
Will I receive results from the research?
You will receive periodic newsletters to update you on the research study in general, however reports about research done with your specific samples will not be given to you or your doctor, or be put in your health records. Sometimes samples are used for genetic research (about diseases that are passed on in families). Even if your samples are used for this kind of research, you will not be told about the results and these results will not be put in your health records. The research done with your samples may help to develop new products in the future, which may have monetary value, but you will not get paid.
How long will I be involved?
Following your initial interview, you will be scheduled for three shorter self administered questionnaires at 24 month intervals. Therefore, active participation is requested for six years. Your samples and interview/questionnaire information will be stored for the duration of this study and then disposed of according to Health Research Ethics Board guidelines.
What are the benefits?
There will be no direct benefit to you from these studies, and the results of these studies will not affect your treatment. The research that may be done with your samples is not designed for you specifically. However, the knowledge gained may help us learn about, prevent, or treat cancer or other conditions in the future.
What are the risks?
Participation in the B2B Research Program should not cause you any harm. Since the tumour tissue has been removed for diagnosis or treatment, we do not require the removal of any additional tissue. There is always a small risk of infection or bruising when a blood sample is collected from your vein. This risk in no greater than it would be for taking blood samples for regular blood work.
Can I withdraw from this study?
Taking part in this study is voluntary; you may withdraw at any time. Simply contact the Study Coordinator and let them know that you no longer wish to participate and you will not be contacted further regarding this research. Your biological samples will be kept until they are used up, or after the completion of this research, any remaining tissue will be destroyed. No matter what you decide to do, it will not affect your medical care.