Swiss Primary Sclerosing Cholangitis Cohort Study
Overview
Research project in which biological material is sampled and health-related personal data is further used and collected. Coded data are used.
Study Type
- Study Type: Observational [Patient Registry]
- Study Design
- Time Perspective: Prospective
- Study Primary Completion Date: December 31, 2022
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
Clinical Trial Outcome Measures
Primary Measures
- Disease course
- Time Frame: 3 years
- Observing disease course
- Disease features
- Time Frame: 3 years
- Observing disease features in Swiss population and see if they are similar to other countries’
- Response to treatment
- Time Frame: 3 years
- Observing response to treatment
- Overall survival
- Time Frame: 3 years
- Observing overall survival
- Transplantation-free survival rate
- Time Frame: 3 years
- Observing transplantation-free survival rate
Participating in This Clinical Trial
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
Gender Eligibility: All
Minimum Age: N/A
Maximum Age: N/A
Investigator Details
- Lead Sponsor
- Fondazione Epatocentro Ticino
- Provider of Information About this Clinical Study
- Sponsor
- Overall Contact(s)
- Benedetta Terziroli Beretta-Piccoli, MD, +41919608503, benedetta.terziroli@hin.ch
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