[Pubmed] 278th ENMC International Workshop: European standards for harmonization of myasthenia gravis registries and eme
Posté : 19 mai 2025 12:00
Neuromuscul Disord. 2025 May 18;51:105368. doi: 10.1016/j.nmd.2025.105368. Online ahead of print.
ABSTRACT
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.
PMID:40388880 | DOI:10.1016/j.nmd.2025.105368
Source: https://pubmed.ncbi.nlm.nih.gov/4038888 ... t9+e462414