For participants in the PBCB project
Information for those participating in the Prospective Breast Cancer Biobank project.
Your Rights as a Participant
Eligible participants in the biobank will be asked during a consultation at the hospital if they wish to contribute biological material and data to the PBCB before surgery. Participating in the study will not affect your treatment plan.
As a participant, you will receive verbal and written information about the biobank. You must consent to the use of the material and data for future research on breast cancer.
Providing biological material to the PBCB is voluntary and requires informed consent.
New projects that will use material and data from the PBCB will be assessed by a regional committee for medical and health research ethics (REK). Such a committee will approve any use of samples/data in individual studies if they believe that the study falls within the scope of what you have consented to.
What Happens to the Biological Material?
The biological material and data collected in the PBCB will be stored permanently in the biobank. All other information will be linked to specified research projects. Such information will be deleted/anonymised when the various projects are completed. It will not be possible to identify participants in the results of the various studies when these are published.
You can choose at any time not to provide a sample, or withdraw your consent without this affecting your treatment at the hospital. If you withdraw from the study, you can choose whether already collected biological material can be used for further research, or whether it should be destroyed.
User Involvement in the Project
The PBCB has an active collaboration with two user representatives from the regional breast cancer association. Both serve as active partners in the User Involvement programme, and participate in our project meetings. They are both former breast cancer patients and have provided valuable input to the PBCB projects. This has given an important boost to the study group.
At the request of the users, the PBCB has also started a new research area: Fatigue and workplace participation among breast cancer survivors.
Furthermore, our users actively participate in the design of consent forms and information letters sent to patients. They also provide important input for research funding applications, and valuable advice when we communicate the results both in writing and verbally to various media.