For participants
The general research biobank PBCB is a regional collaboration between Haukeland University Hospital (HUS) and Stavanger University Hospital (SUS) where we collect biological material from breast cancer patients.
The biobank was first started at HUS in 2010 by Professor Ernst Lien at the hormone laboratory in collaboration with Professor Håvard Søiland at SUS. Håvard Søiland started the biobank at SUS in the transition 2012/2013. The goal of the PBCB study is to include 1200 patients in total. To date, more than 700 patients have been included in Bergen and over 300 in Stavanger (2019). The enrolled patients are scheduled to follow up regularly for 11 years, collecting blood and urine samples each year. In Stavanger, blood and urine samples are also collected every six months in addition to a questionnaire package.
Special to PBCB is the systematic and broad collection of blood samples, which could form a unique basis for a better biological understanding of breast cancer, including better biomarkers for diagnosis, prognosis and prediction of treatment response. The research will also form the basis for developing new drugs, treatment methods and possible new methods for following up patients in terms of disease development and quality of life.
The material will be used for ongoing and future breast cancer research at SUS/HUS and with collaborating institutions in Norway and abroad. All research is approved by the Regional Committee for Medical and Health Research Ethics before start-up, and all participants have given written consent for inclusion in the biobank
User participation in the project
PBCB has an active collaboration with two user representatives from the Regional Breast Cancer Association (Breast Cancer Society). Both act as active partners in the User Participation Program and participate in our project meetings. They are both former breast cancer patients and have provided valuable input in several aspects of the PBCB projects. This has given an important boost to the study group.
At the urging of users, PBCB has started a new research area: Fatigue and labour market participation in breast cancer survivors. Furthermore, our users actively participate in the preparation of consent forms and information letters sent to patients. They also provide important input on applications for research funding. Users also give useful advice when disseminating results in the various media (written and oral). User participation has given PBCB an important extra dimension, which we want to develop further in the future.