ScandPSC was established 2019 following a generous donation from the Halloran Family Foundation. The project is a collaborative effort between Karolinska University Hospital (Sweden) and the Norwegian PSC Research Center (NoPSC) at Oslo University Hospital (Norway), two strong scientific environments with more than 30 years of legacy in PSC research, in collaboration with dedicated clinical and academic centers across Sweden and Norway. Scandinavia is a geographical “hot-spot” for PSC, with a high willingness in patients to participate in research studies and very good healthcare infrastructures coupled to unique national registries, altogether providing ideal conditions for high-quality, well-powered prospective studies.
ScandPSC has built one of the world’s largest prospective biobanks and clinical data registries for people with non-transplant PSC. The original aim of including >1300 individuals was reached in 2024.
Strengths of ScandPSC include:
- Large, population-based cohort
- Low loss to follow-up
- Well-monitored clinical and biochemical data
- High-quality biobank Standard Operating Procedure (SOP) & storage
- Repeated data and biosamples from annual study visits
- Hard endpoints verified by national registries for cancer, liver transplantation, death
This resource will be open for study applications when monitoring has assured satisfactory data quality. Relevant study protocols will be evaluated by the Board.