Cancer control using population based registries and biobanks (CCPRB)

The CCPRB network joined large biobanks with up to 30 years of follow-up and >60.000 prospectively occurring cancer cases and cancer registries with >40 years of population-based registration in order to provide the study base for uniquely large population-based prospective studies on cancer and define and implement a European Quality Standard for Biobanking.

The aim is also to enable large-scale, population-based research on evaluation of cancer treatment and design optimal strategies for cancer prevention and its evaluation.


In CCPRB collaboration between large national and international biobank studies is aimed at validating the biological significance of previous research and detecting previously unknown causes of cancer. In order to achieve this goal discrepancy in national policies and regulation regarding information and consent procedures must be overcome. During the first period a comparative analysis of national and international ethical and legal frameworks was made and on this basis a common ethical framework for all partners have been formulated, and also decided by the assembly of CCPRB.

The ethical framework is consistent with general European guidelines, e.g. The Convention on Biomedicine and Human Rights by the European Council. Solutions to specific problems regarding international biobank collaboration are based on sound ethical research and results are published or submitted to international peer review journals in order to gain academic credibility and international recognition.

Contact at CRB

Professor Joakim Dillner at Lund University is coordinator of the CCPRB network.

Biobank and registry ethics & law

For many years, researchers at CRB have provided constructive advise on how to deal with ethical and legal aspects of research using human tissue material and personal data. We have collaborated with biomedical scientists and published our findings in peer reviewed journals. As a summary of this research we have compiled a list of publications with abstracts. We have grouped them thematically to help you find the ones you might be interested in reading. Our publications deal with ethical frameworks and policy, regulatory aspects of biobank and registry research, informed consent, ethical review, integrity concerns, trust, genetic testing, indicental findings, commercialization, public and patient perceptions, rare diseases, children & biobanks & genetics, and biobank studies.

Download our biobank and registry report

Biobank and registry ethics & law, report cover