1. New Oslo PSC biobank

2.  Broad consent – covers all clinical and research biobanking  Integrated storage of clinical data and biological material  DNA, RNA (blood), serum, plasma, cell-isolates  Biliary eptihelial cells (brushings), bile, intestinal biopsies  Fresh tissue at liver explantation, cancer tissue at resection  Standardized and written protocols all steps (SOP)  Regular QC of stored material  Barcode-based inventory system (-80°C/liquid nitrogen) New Oslo PSC biobank

3. Physical storage system

5. Database integration

6. Biobanking - background Norsk senter for PSC

7. Biobanks ?  Population banks  Biomarkers of susceptibility and population identity, and their operational substrate is germinal-line DNA from a huge number of healthy donors, representative of a concrete country/region or ethnic cohort  Disease-oriented banks for epidemiology  Biomarkers of exposure, using a huge number of samples, usually following a healthy exposed cohort/ case–control design studying germinal-line DNA or serum markers and a great amount of specifically designed and collected data.  Disease-oriented general biobanks (i.e. tumour banks)  Biomarkers of disease through prospective and/or retrospective collections of tumour and no-tumour samples and their derivates (DNA/RNA/ proteins), usually associated to clinical data and sometimes associated to clinical trials.  The amount of clinical data linked to the sample determinate the availability and biological value of the sample Norsk senter for PSC

8. Biobanking in PSC – why and how ?  Ethiopatogenesis  Serum/plasma samples  DNA-samples  Liver biopsies/ explanted liver  Bile duct cytology/biopsies  Colon biopsies: IBD+/-  Disease progression  Liver biopsies  Bile duct cytology/biopsies  Cholangiocancer  Tumor material  Dysplasia cytology Norsk senter for PSC

9.  Controversy: Competition vs. collaboration  Types of material?  Minimal level  Standardization (SOP)  study group website w/protocols?  Material exchange conditions  study group MTA ?  Study proposals  centers Biobanking in PSC:Discussion