第278届ENMC国际研讨会：重症肌无力登记和新兴数字解决方案协调的欧洲标准。2024年9月20日至21日，荷兰胡夫多普

IF 2.7 4区医学 Q2 CLINICAL NEUROLOGY

Neuromuscular Disorders Pub Date : 2025-05-18 DOI:10.1016/j.nmd.2025.105368

Sabrina Sacconi , Fiammetta Vanoli , Frauke Stascheit , Elena Cortés-Vicente , Renato Mantegazza , Andreas Meisel , 278th ENMC Workshop participants

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引用次数: 0

摘要

欧洲神经肌肉中心研讨会召集了各种主要利益攸关方，致力于统一国家重症肌无力登记和新兴数字解决方案的欧洲标准。与会者包括来自制药业的代表、患者权益组织、具有重症肌无力专业知识的临床医生以及欧洲罕见神经肌肉疾病参考网络的成员。这种多学科的组成，以及初步的活动，促进了热烈的讨论，并促进了未来努力的共同目标的确定，以允许各国重症肌无力登记处在欧洲一级进行合作。在整个研讨会期间，出现了相关主题，强调了在国家登记中协调重症肌无力数据和改善重症肌无力患者预后方面的挑战和优势。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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278th ENMC International Workshop: European standards for harmonization of myasthenia gravis registries and emerging digital solutions. 20th-21st September 2024, Hoofddorp, The Netherlands

The European Neuromuscular Centre workshop convened a diverse array of key stakeholders dedicated to the European standards for harmonization of national Myasthenia Gravis registries and emerging digital solutions. Participants included representatives from the pharmaceutical industry, patient advocacy organizations, clinicians with expertise in Myasthenia Gravis, and members of the European Reference Network for Rare Neuromuscular Diseases. This multidisciplinary composition, as well as preliminary activities, fostered robust discussions and facilitated the identification of shared objectives for future endeavors to allow collaboration at European level among national Myasthenia Gravis registries. Throughout the workshop sessions, relevant topics emerged, highlighting both the challenges and strengths towards harmonizing data on myasthenia gravis in national registries and improving outcomes for patients with myasthenia.

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来源期刊

Neuromuscular Disorders 医学-临床神经学

CiteScore

4.60

自引率

3.60%

发文量

543

审稿时长

53 days

期刊介绍： This international, multidisciplinary journal covers all aspects of neuromuscular disorders in childhood and adult life (including the muscular dystrophies, spinal muscular atrophies, hereditary neuropathies, congenital myopathies, myasthenias, myotonic syndromes, metabolic myopathies and inflammatory myopathies). The Editors welcome original articles from all areas of the field: • Clinical aspects, such as new clinical entities, case studies of interest, treatment, management and rehabilitation (including biomechanics, orthotic design and surgery). • Basic scientific studies of relevance to the clinical syndromes, including advances in the fields of molecular biology and genetics. • Studies of animal models relevant to the human diseases. The journal is aimed at a wide range of clinicians, pathologists, associated paramedical professionals and clinical and basic scientists with an interest in the study of neuromuscular disorders.