My Clinical Outcomes for Ipsen
Primary Biliary Cholangitis (PBC) is a rare autoimmune liver disease in which the body gradually destroys its own bile ducts, leading to cholestasis, a build-up of bile acids in the body, progressive liver damage and, in some cases, cirrhosis. Beyond clinical measures, patients often experience significant symptoms such as fatigue and itching. Fatigue affects up to 80% (1) of patients and, along with itching, can have a profound impact on physical, emotional, and social wellbeing. These symptoms are not always fully reflected in routine clinical assessments.
Ipsen Ltd has partnered with My Clinical Outcomes (MCO) to offer NHS centres that specialise in PBC the use of a bespoke Patient-Reported Outcome Measures (PROMs) platform to support the management of PBC patients. The service is being offered as a free-of-charge donation for the purpose of supporting clinical care and with no expectation of any benefit to Ipsen Ltd in return. The platform has been solely created by My Clinical Outcomes and fully funded by Ipsen. Ipsen does not have access to any patient data.
By tracking symptoms and Quality of Life in a structured way, the project provides valuable insights for patients and clinicians, supporting more personalised care and improvements in quality of life.
““We’re thrilled to work alongside Ipsen in bringing PROMs to the forefront of care for patients with PBC in the NHS. This collaboration gives the NHS a powerful opportunity to measure what truly matters to patients—their quality of life.””
““We’re excited to collaborate with digital PROMs experts, My Clinical Outcomes to support the NHS in capturing patient-reported outcome measures (PROMs) for those living with primary biliary cholangitis (PBC). This partnership reflects our shared commitment to placing patient experience at the heart of care, enabling more meaningful insights and ultimately improving outcomes for people affected by rare liver diseases.””
(1) Faisal A. Understanding fatigue and pruritus in primary biliary cholangitis. Clin Liver Dis (Hoboken). 2024 May 31;23(1):e0216. doi: 10.1097/CLD.0000000000000216. PMID: 38831766; PMCID: PMC11146472.