ERN RARE-LIVER Workshop on CMV treatment in Biliary Atresia in Vienna
On 31 January 2026, ERN RARE-LIVER hosted a workshop in Vienna bringing together clinicians and researchers from paediatric hepatology and surgery centres across Europe to discuss cytomegalovirus (CMV) infection in children with biliary atresia (BA) and the development of a collaborative European study.
The workshop provided an opportunity to review current evidence and clinical experience in CMV-positive biliary atresia and to exchange perspectives on current approaches across European centres. Discussions highlighted differences in CMV testing and antiviral treatment practices, as well as the need for stronger prospective evidence to better understand the role of CMV and the potential impact of antiviral treatment in this rare patient population.
A major focus of the workshop was the design and feasibility of a European multicentre study. Different methodological approaches were considered, including randomised and prospective observational designs. Following discussion of their respective advantages and practical challenges, participants agreed to further develop a pragmatic prospective cohort study that would facilitate broad participation across the ERN RARE-LIVER network and collaborating centres.
The group also reviewed key elements of the proposed study protocol, including CMV testing and treatment, relevant clinical outcomes, patient inclusion, data collection and regulatory considerations. The existing EBAR infrastructure was discussed as a potential basis for study data collection, allowing the project to build on established structures within the network while keeping additional requirements for participating centres manageable.
The workshop concluded with a shared commitment to move the initiative forward. Next steps include refining the study protocol and statistical approach, engaging additional European centres, and involving patient and parent representatives. The study will continue to be developed within the collaborative framework of ERN RARE-LIVER and its wider professional network.