Background Rare diseases can lead to a significant reduction in quality of life for patients
and their families. Ensuring the patients voice is central to clinical decision making is key to …

Abbreviations: AASLD, American Association for the Study of Liver Diseases; AIH,
autoimmune hepatitis; ALP, alkaline phosphatase; ASIR, age standardized incidence rate; …

Background Patient-reported outcome measures (PROMs) can provide valuable insights on
the impact of a disease or treatment on a patient's health-related quality of life. In …

Background Rare diseases may be life-threatening or chronically debilitating conditions.
Patient care needs are often complex and challenging to coordinate and deliver effectively …

Introduction Generic or condition-specific Patient-reported Outcome Measures (PROMs) are
used to measure physical, mental, and social aspects of health to promote patient-centered …

Background Electronic patient-reported outcome (ePRO) systems are increasingly used in
clinical trials to provide evidence of efficacy and tolerability of treatment from the patient …

Background Primary sclerosing cholangitis (PSC) is a rare bile duct and liver disease which
can considerably impact quality of life (QoL). As part of a project developing a measure of …

Background Measuring symptoms and disease burden in patients with primary sclerosing
cholangitis (PSC) is increasingly important for daily practice and clinical trials. The Simple …

Chronic Liver Disease” by Younossi et al. in the Journal of Hepatology 1. As highlighted by
the authors, while improvement or cure in certain CLDs may alleviate fatigue, currently …

Liver transplantation is a highly complex, life-saving, treatment for many patients with
advanced liver disease. Liver transplantation requires multidisciplinary teams, systemwide …