Toward European harmonization of national myasthenia gravis registries: modified Delphi procedure-based expert consensus on collectable data

Toward European harmonization of national myasthenia gravis registries: modified Delphi procedure-based expert consensus on collectable data

Abstract Background Myasthenia gravis (MG) is a rare autoimmune disorder. Several new treatment concepts have emerged in recent years, but access to these treatments varies due to differing national reimbursement regulations, leading to disparities across Europe. This highlights the need for high-qu...

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Main Authors: Abderhmane Slioui, Giulia Tammam, Fiammetta Vanoli, Adela Della Marina, Stanislav Vohanka, Nils Erik Gilhus, Isabella Moroni, Maria Isabel Leite, Fredrik Piehl, Carlo Antozzi, Jonathan Pini, Frauke Stascheit, Shahram Attarian, Ernestina Santos, Jan Verschuuren, Lou Canonge, Jeremy Garcia, Caroline Perriard, Elena Cortés-Vicente, Renato Mantegazza, Andreas Meisel, Sabrina Sacconi
Format: Article
Language:English
Published: BMC 2025-03-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Rare disease registry
Delphi procedure
Myasthenia gravis
European registry
Expert panel
Online Access:https://doi.org/10.1186/s13023-024-03520-3
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