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Research project in which biological material is sampled and health-related personal data is further used and collected.
Coded data are used.
The investigators wish to collect high quality prospective data on a rare disease in order to elucidate epidemiology, natural history, response to treatment and outcome. In addition, a 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 PSC. In addition, the cohort will allow collaborations with reference networks on PSC 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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PSC patients living in Switzerland of any age Patients diagnosed with PSC according to established criteria (European Association for the Study of the Liver. EASL Clinical Practice Guidelines: management of cholestatic liver diseases). Only patients living in Switzerland are enrolled. Enrollment of minors is possible upon consent of legal guardian
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Andreas Cerny, Prof. Dr. med | Contact | +41 91 910 6570 | 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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| Gastroenterologie und Hepatologie Clarunis - Universitäres Bauchzentrum Universitätsspital Basel | Recruiting | Basel | 4031 | Switzerland |
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| Universitäts-Kinderspital beider Basel UKBB, Gastroenterologie&Ernährung | Recruiting | Basel | 4031 | Switzerland |
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| Inselspital | Recruiting | Bern | 3010 | Switzerland |
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| Kinderklinik, INSELSpital, Universität Bern, Pädiatrische Gastroenterologie, Hepatologie und Ernährung | 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, Centre Suisse des Maladies du foie de l'Enfant- Département de l'Enfant et de l'Adolescent | Recruiting | Geneva | 1205 | 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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| CHUV Département femme-mère-enfant | Recruiting | Lausanne | 1011 | Switzerland |
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| Kantonsspital Baselland | Recruiting | Liestal | 4410 | Switzerland |
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| Kinderspital Luzern LUKS, Pädiatrische Gastroenterologie | Recruiting | Lucerne | 6000 | 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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| Ostschweizer Kinderspital | Recruiting | Sankt Gallen | 9006 | 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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| Pädiatrische Gastroenterologie Departement Kinder- und Jugendmedizin Kantonsspital Winterthur | Recruiting | Winterthur | 8400 | Switzerland |
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| Universitäts-Kinderspital Zürich - Eleonorenstiftung | Recruiting | Zurich | 8032 | Switzerland |
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| Universitätsspital Zürich | Recruiting | Zurich | 8091 | Switzerland |
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| ID | Term |
|---|---|
| D015209 | Cholangitis, Sclerosing |
| ID | Term |
|---|---|
| D002761 | Cholangitis |
| D001649 | Bile Duct Diseases |
| D001660 | Biliary Tract Diseases |
| D004066 | Digestive System Diseases |
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