1. Building a database on PSC a Dutch perspective The EpiPSCPBC project C. Ponsioen

2. Epidemiology & Natural History of, as well as Risk Factors for Primary Sclerosing Cholangitis and Primary Biliary Cirrhosis in the Netherlands A true population-based cross-sectional survey C. Ponsioen

3. AGG, Stichts & Duamutef regio’s n=2.965.000 n=1.314.000 n=1.545.000 totaal n= 5.824.000

4. catchment area total n= 8.407.942

5. MethodsMethods Case finding Criteria of Metcalf & James *) 1.stringent case inclusion criteria 2.clear definition of date of onset disease 3.well-defined study period, area and population 4.multiple case-finding methods 5.rigorous tracing of all possible cases Case finding Criteria of Metcalf & James *) 1.stringent case inclusion criteria 2.clear definition of date of onset disease 3.well-defined study period, area and population 4.multiple case-finding methods 5.rigorous tracing of all possible cases * ) Metcalf JV & James OFW. Semin Liver Dis 1997; 17:13-22

6. Organogram Case finding: local physician DBC registration PALGA PSC/PBC ? case ascertainment PSC / PBC AMA listingendoscopy database IBD and non-IBD controls

7. MethodsMethods Data collection: demographic data treating GP, gastroenterologist, and pharmacy IBD phenotype occurrence of CRC occurrence of cholangiocarcinoma liver transplantation death and cause gallstones appendectomy smoking behaviour family history of IBD and auto-immune liver disease medication history from pharmacy serum and DNA collection

8. MethodsMethods copies of yearly correspondence Follow-up data collection : data monitor

9. current status after 27/46 centers

10. geographical distribution

11. important issues stringent case inclusion criteria rigorous case ascertainment appropriate choice of control groups

12. Building a database on PSC a Dutch perspective The EpiPSCPBC project C. Ponsioen

13. geographical distribution