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Research project in which biological material is sampled and health-related medical data is collected. In addition, already existing health-related medical data are used for further research. Coded data are used.
Enrolment visit and one follow-up visit at least once a year are planned.
Whole blood is collected for biobanking once a year. Optionally, if available and collected during normal clinical procedures, liver fragments are obtained.
To collect high quality prospective data on a rare disease in order to elucidate epidemiology, natural history, response to treatment and outcome. In addition, the biobank allows addressing specific scientific issues on a variety of open questions. The cohort will provide a platform for carrying out scientific research projects on PBC. In addition, the cohort will allow collaboration with reference networks on PBC abroad.
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| Measure | Description | Time Frame |
|---|---|---|
| Disease course | Observing disease course | 3 years |
| Disease features | Observing disease features in Swiss population and see if they are similar to other countries' | 3 years |
| Response to treatment | Observing response to treatment | 3 years |
| Overall survival | Observing overall survival | 3 years |
| Transplantation-free survival rate | Observing transplantation-free survival rate | 3 years |
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Inclusion Criteria:
Exclusion Criteria:
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Patients diagnosed with Primary biliary cholangitis according to recognized criteria (European Association for the Study of the Liver. EASL Clinical Practice Guidelines: management of cholestatic liver diseases). Subjects with isolated anti-mitochondrial antibodies and/or isolated PBC-specific anti-nuclear antibodies are also included. Patients/subjects aged at least 18 years and living in Switzerland are included.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Andreas Cerny, Prof. Dr. med | Contact | +41919106570 | andreas.cerny@hin.ch |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Fondazione Epatocentro Ticino | Recruiting | Lugano | Canton Ticino | 6900 | Switzerland |
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| ID | Term |
|---|---|
| D008105 | Liver Cirrhosis, Biliary |
| ID | Term |
|---|---|
| D002780 | Cholestasis, Intrahepatic |
| D002779 | Cholestasis |
| D001649 | Bile Duct Diseases |
| D001660 | Biliary Tract Diseases |
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| Gastroenterologie und Hepatologie, Clarunis - Universitäres Bauchzentrum Basel | Recruiting | Basel | 4031 | Switzerland |
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| Inselspital | Recruiting | Bern | 3010 | Switzerland |
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| Spital Bülach | Recruiting | Bülach | 8180 | Switzerland |
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| Kantonsspital Graubünden | Recruiting | Chur | 7000 | Switzerland |
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| Hôpitaux Universitaires de Genève, Service de Gastroentérologie & Hépatologie, Département des Spécialités | Recruiting | Geneva | 1205 | Switzerland |
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| CHUV: Centre hospitalier universitaire vaudois | Recruiting | Lausanne | 1005 | Switzerland |
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| Kantonsspital Baselland | Recruiting | Liestal | 4410 | Switzerland |
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| Luzerner Kantonsspital | Recruiting | Lucerne | 6000 | Switzerland |
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| EOC Ospedale Regionale di Lugano - Italiano | Recruiting | Lugano | 6900 | Switzerland |
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| Kantonsspital St.Gallen | Recruiting | Sankt Gallen | 9007 | Switzerland |
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| Kantonsspital Winterthur | Recruiting | Winterthur | 8400 | Switzerland |
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| Universitätsspital Zürich | Recruiting | Zurich | 8091 | Switzerland |
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| D004066 |
| Digestive System Diseases |
| D008107 | Liver Diseases |
| D008103 | Liver Cirrhosis |
| D005355 | Fibrosis |
| D010335 | Pathologic Processes |
| D013568 | Pathological Conditions, Signs and Symptoms |