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

欧洲威尔逊病管理:ERN-RARE 肝病组开展的一项国际医生调查

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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 (

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