Swiss Primary Sclerosing Cholangitis Cohort Study
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- This is an observational study: the protocol does not assign a study treatment.
- Who it may be relevant to
- Registry conditions: Cholangitis, Sclerosing, PSC, Primary Sclerosing Cholangitis (PSC). Basic parameters: No limits · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- Switzerland
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
Unsure about the terms? Read our patient guide →
Overview
Research project in which biological material is sampled and health-related personal data is further used and collected. Coded data are used.
Detailed description
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
Primary outcome measures
- Disease course [Time frame: 3 years]
- Disease features [Time frame: 3 years]
- Response to treatment [Time frame: 3 years]
- Overall survival [Time frame: 3 years]
- Transplantation-free survival rate [Time frame: 3 years]
Eligibility criteria
Inclusion criteria
- 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) of any age. Patients not fulfilling such criteria but still diagnosed with PSC in a hepatology referral centre can be included
- patients living in Switzerland
Exclusion criteria
- N/A
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Observational model
- Cohort
Study locations
Switzerland · 21 centers
- Fondazione Epatocentro Ticino — Lugano
- Gastroenterologie und Hepatologie Clarunis - Universitäres Bauchzentrum Universitätsspital — Basel
- Universitäts-Kinderspital beider Basel UKBB, Gastroenterologie&Ernährung — Basel
- Inselspital — Bern
- Kinderklinik, INSELSpital, Universität Bern, Pädiatrische Gastroenterologie, Hepatologie u — Bern
- Spital Bülach — Bülach
- Kantonsspital Graubünden — Chur
- Hôpitaux Universitaires de Genève, Centre Suisse des Maladies du foie de l'Enfant- Départe — Geneva
- … and 13 more centers
Identifiers
NCT: NCT03146936 · SASL40 - Swiss PSC Cohort