08:30–09:00
Registration and Networking
09:00–09:10
Welcome and Introduction
Prof. Douglas Thorburn, Dr. Maciej Janik, Prof. Piotr Milkiewicz
09:10–09:20
PSC – clinical course and symptoms that impact adult patients’ wellbeing
Prof. Piotr Milkiewicz (Medical University Warsaw, Poland)
09:20–09:30
PSC – clinical course and symptoms that impact adolescent patients’ wellbeing
Prof. Ulrich Baumann (Hannover Medical School, Germany)
09:30–09:50
Current landscape of Quality of Life and its measurement in PSC
Prof. Shivani Sharma (Aston University, UK)
09:50–10:10
PREM/PROM, how does this drive practice (development of regulatory approval and driving practice)
Prof. Devin Peipert (University of Birmingham, UK)
11:00–11:10
Perspectives of Clinicians treating adults with PSC
Dr. Johannes Hartl (University Medical Centre Hamburg-Eppendorf, Germany)
11:10–11:20
Perspectives of Clinicians treating children and adolescents with PSC
Prof. Piotr Socha (Children’s Health Memorial Centre Institute, Poland)
11:20–11:40
Perspectives of People Living with PSC
Mark Chatterley (PSC Support, UK)
11:40–12:05
Perspectives of Regulators
Kelly Plueschke (European Medicines Agency, Netherlands)
12:05–12:30
Perspectives of Industry
Chaired by Prof. Douglas Thorburn (University College London, UK)
13:30–13:40
Outline of the Current Research Landscape (1): Understanding Fatigue in PSC
Alice Freer (University of Birmingham, UK)
13:40–13:50
Outline of the Current Research Landscape (2): Continuing Development of the UK PSC QoL
Ryan James (University of Hertfordshire, UK)
13:50–14:00
Outline of the Current Research Landscape (3): QoL and treatment confidence in PSC. Remarks from ERN RARE-LIVER QoL online survey.
Dr. Ewa Wunsch (Pomeranian Medical University, Poland)
14:00–14:10
Outline of the Current Research Landscape (4): PSC Symptom Assessment Project (PSC-SAP)
Dr. Donna Evon (University of North Carolina at Chapel Hill, USA)
14:10–14:20
Outline of the Current Research Landscape (5): Quality of life in Australian patients with PSC: our experience with the PSC-PRO
Dr. Natassia Tan (Alfred Hospital, Australia)
14:20–14:30
Outline of the Current Research Landscape (6): Quality of life in patients with primary sclerosing cholangitis - Denmark perspective
Prof. Henning Grønbæk (Aarhus University Hospital, Denmark)
14:30–14:40
Outline of the Current Research Landscape (7): Outline of the Simple Cholestatic Complaint Score
Dr. Hólmfríður Helgadóttir (Oslo University Hospital, Norway)
14:40–15:50
Roadmap for the Future of Quality-of-Life Measures in PSC
Prof. Shivani Sharma (Aston University, UK)
Dr. Maciej Janik (Medical University Warsaw, Poland)
Prof. Douglas Thorburn (University College London, UK)