Cholangitis, Sclerosing, Primary Sclerosing Cholangitis (PSC), PSC
Conditions
Keywords
PSC, Primary Sclerosing Cholangitis, Cohort
Brief summary
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
Interventions
None listed
Sponsors
Fondazione Epatocentro Ticino
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Healthy volunteers
No
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Disease course | 3 years | Observing disease course |
| Disease features | 3 years | Observing disease features in Swiss population and see if they are similar to other countries' |
| Response to treatment | 3 years | Observing response to treatment |
| Overall survival | 3 years | Observing overall survival |
| Transplantation-free survival rate | 3 years | Observing transplantation-free survival rate |
Countries
Switzerland
Contacts
Primary ContactAndreas Cerny, Prof. Dr. med
Outcome results
None listed