Management of Wilson disease across Europe: an international physician-oriented survey by the ERN-RARE Liver group.

ABSTRACT:

Background

Wilson disease (WD) is a rare disorder resulting in copper overload. Diagnosis and treatment are complex and highly specialized. We aimed to investigate the management of WD across Europe in line with the mission and framework of the European Reference Network on Rare Liver Disease (ERN-RARE Liver).

Methods

A 37-item questionnaire was distributed among European WD centers. Questions related to WD included diagnosis, treatment, monitoring, patient perspectives, and background information. Responding centers were classified as small or large by the number of patients seen per year (ResultsSixty-two physicians from 20 countries responded. 58 were included in the analysis. Most physicians were hepatologists. A high, but incomplete degree of adher

SUBMITTER: Kirk FT 

PROVIDER: S-EPMC12607149 | biostudies-literature | 2025 Nov

REPOSITORIES: biostudies-literature