Toward European harmonization of national myasthenia gravis registries: modified Delphi procedure-based expert consensus on collectable data
Through a modified Delphi procedure, consensus was successfully achieved. This consensus-based approach represents a crucial step toward harmonizing MG registries across Europe. The resulting dataset will facilitate the sharing of knowledge and enhance European collaborations. Furthermore, the harmonized data may assist in regulatory or reimbursement decisions regarding novel therapies, as well as address treatment access disparities between European countries.
Authors
- Elena Cortés‐Vicente (ORCID: https://orcid.org/0000-0002-1428-1072)
- Carlo Antozzi (ORCID: https://orcid.org/0000-0001-9270-5224)
- Fiammetta Vanoli (ORCID: https://orcid.org/0000-0002-9081-6462)
- Jan J.G.M. Verschuuren (ORCID: https://orcid.org/0000-0002-4572-1501)
- Renato Mantegazza (ORCID: https://orcid.org/0000-0002-9810-5737)
- Maria Isabel Leite (ORCID: https://orcid.org/0000-0002-4277-9855)
- Nils Erik Gilhus (ORCID: https://orcid.org/0000-0001-6522-5102)
- Adela Della Marina (ORCID: https://orcid.org/0000-0003-0737-6142)
- Frauke Stascheit (ORCID: https://orcid.org/0000-0001-5306-7880)
- Jeremy Garcia
- Ernestina Santos (ORCID: https://orcid.org/0000-0003-4053-8940)
- Stanislav Voháňka (ORCID: https://orcid.org/0000-0002-2229-624X)
- Andreas Meisel (ORCID: https://orcid.org/0000-0001-7233-5342)
- Sabrina Sacconi (ORCID: https://orcid.org/0000-0002-0246-1455)
- Isabella Moroni (ORCID: https://orcid.org/0000-0002-3322-1681)
- Fredrik Piehl (ORCID: https://orcid.org/0000-0001-8329-5219)
- Giulia Tammam (ORCID: https://orcid.org/0009-0007-4759-5266)
- Jonathan Pini (ORCID: https://orcid.org/0000-0002-0882-4472)
- Shahram Attarian (ORCID: https://orcid.org/0000-0002-7211-4694)
- Abderhmane Slioui
- Lou Canonge
- Caroline Perriard
Institutions
- UniLaSalle Amiens (ESIEE-Amiens) (FR)
- Centre National de la Recherche Scientifique (FR)
- Karolinska University Hospital (SE)
- Inserm (FR)
- Universidade do Porto (PT)
- Masaryk University (CZ)
- Aix-Marseille Université (FR)
- University of Pavia (IT)
- Leiden University Medical Center (NL)
- Hospital de Sant Pau (ES)
- John Radcliffe Hospital (GB)
- Karolinska Institutet (SE)
- Centre Hospitalier Universitaire de Nice (FR)
- Humboldt-Universität zu Berlin (DE)
- University of Oxford (GB)
- University Hospital Brno (CZ)
- Institut de Recherche sur le Cancer et le Vieillissement de Nice (FR)
- Hospital de Santo António (PT)
- Fondation Lenval (FR)
- Hôpital Pasteur (FR)
- Université Gustave Eiffel (FR)
- Fondazione IRCCS Istituto Neurologico Carlo Besta (IT)
- University of Bergen (NO)
- University of Duisburg-Essen (DE)
- Freie Universität Berlin (DE)
- Charité - Universitätsmedizin Berlin (DE)
- Sapienza University of Rome (IT)
Publication Details
- Journal
- Orphanet Journal of Rare Diseases
- Published
- 2025-03-11
- DOI
- https://doi.org/10.1186/s13023-024-03520-3
- Citations
- 1
- Primary Topic
- Myasthenia Gravis and Thymoma
- Type
- article
- Field-Weighted Citation Impact
- 1.39