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Building a database on PSC a Dutch perspective

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

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Building a database on PSC a Dutch perspective

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

  2. Epidemiology & Natural History of, as well as Risk Factors for Primary SclerosingCholangitis 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=1.545.000 n=1.314.000 totaal n= 5.824.000

  4. catchment area total n= 8.407.942

  5. Methods Case finding Criteria of Metcalf & James *) stringent case inclusion criteria clear definition of date of onset disease well-defined study period, area and population multiple case-finding methods 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 endoscopy database PSC/PBC ? AMA listing PALGA case ascertainment IBD and non-IBD controls PSC / PBC

  7. Methods • 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. Methods Follow-up data collection: copies of yearly correspondence 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 PSCa Dutch perspective The EpiPSCPBC project C. Ponsioen

  13. geographical distribution

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