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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-quality data collection by stakeholders to establish MG registries. A European MG registry could help bridge the treatment access gap across different countries, offering critical data to support regulatory decisions, foster international collaborations, and enhance clinical and epidemiological research. Several national MG registries already exist or are in development. To avoid duplication and ensure harmonization in data collection, a modified Delphi procedure was implemented to identify essential data elements for inclusion in national registries.<\/jats:p>\n          <\/jats:sec>\n          <jats:sec>\n            <jats:title>Results<\/jats:title>\n            <jats:p>Following a literature review, consultations with patient associations and pharmaceutical companies, and input from multiple European MG experts, 100 data elements were identified. Of these, 62 reached consensus for inclusion and classification, while only 1 item was agreed for exclusion. 30 items failed to reach the \u2265\u200980% agreement threshold and were excluded. Among the 62 accepted items, 21 were classified as mandatory data elements, 32 optional, and 9 items pertained to the informed consent form.<\/jats:p>\n          <\/jats:sec>\n          <jats:sec>\n            <jats:title>Conclusions<\/jats:title>\n            <jats:p>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.<\/jats:p>\n          <\/jats:sec>","DOI":"10.1186\/s13023-024-03520-3","type":"journal-article","created":{"date-parts":[[2025,3,11]],"date-time":"2025-03-11T09:37:54Z","timestamp":1741685874000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["Toward European harmonization of national myasthenia gravis registries: modified Delphi procedure-based expert consensus on collectable data"],"prefix":"10.1186","volume":"20","author":[{"given":"Abderhmane","family":"Slioui","sequence":"first","affiliation":[]},{"given":"Giulia","family":"Tammam","sequence":"additional","affiliation":[]},{"given":"Fiammetta","family":"Vanoli","sequence":"additional","affiliation":[]},{"given":"Adela Della","family":"Marina","sequence":"additional","affiliation":[]},{"given":"Stanislav","family":"Vohanka","sequence":"additional","affiliation":[]},{"given":"Nils Erik","family":"Gilhus","sequence":"additional","affiliation":[]},{"given":"Isabella","family":"Moroni","sequence":"additional","affiliation":[]},{"given":"Maria Isabel","family":"Leite","sequence":"additional","affiliation":[]},{"given":"Fredrik","family":"Piehl","sequence":"additional","affiliation":[]},{"given":"Carlo","family":"Antozzi","sequence":"additional","affiliation":[]},{"given":"Jonathan","family":"Pini","sequence":"additional","affiliation":[]},{"given":"Frauke","family":"Stascheit","sequence":"additional","affiliation":[]},{"given":"Shahram","family":"Attarian","sequence":"additional","affiliation":[]},{"given":"Ernestina","family":"Santos","sequence":"additional","affiliation":[]},{"given":"Jan","family":"Verschuuren","sequence":"additional","affiliation":[]},{"given":"Lou","family":"Canonge","sequence":"additional","affiliation":[]},{"given":"Jeremy","family":"Garcia","sequence":"additional","affiliation":[]},{"given":"Caroline","family":"Perriard","sequence":"additional","affiliation":[]},{"given":"Elena","family":"Cort\u00e9s-Vicente","sequence":"additional","affiliation":[]},{"given":"Renato","family":"Mantegazza","sequence":"additional","affiliation":[]},{"given":"Andreas","family":"Meisel","sequence":"additional","affiliation":[]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0246-1455","authenticated-orcid":false,"given":"Sabrina","family":"Sacconi","sequence":"additional","affiliation":[]}],"member":"297","published-online":{"date-parts":[[2025,3,11]]},"reference":[{"key":"3520_CR1","doi-asserted-by":"publisher","first-page":"523","DOI":"10.1097\/WCO.0b013e3283572588","volume":"25","author":"NE Gilhus","year":"2012","unstructured":"Gilhus NE. 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AM is an advisor, consultant, speaker, and\/or investigator and has received research grants (paid to his institution) and honoraria from Alexion AstraZeneca Rare Disease, argenx, Axunio, Grifols, Hormosan, Immunovant, Janssen, Merck, Novartis, Octapharma, Regeneron, Sanofi and UCB. He served as chairman of the medical advisory board of the German Myasthenia Gravis Society. CA received funding for travel, meeting attendance and advisory board participation from Alexion, Momenta, Sanofi, Janssen, argenx and UCB. CP received sponsorship from Novartis and Jazz Pharmaceuticals. EC received public speaking honoraria and compensation for advisory boards and\/or consultations fees from UCB, argenx, Alexion, Janssen and Lundbeck. ES received travel grants from UCB, argenx, Roche, Novartis and Merck. ES participated in advisory boards from argenx, Alexion, Biogen, Roche, Novartis and Merck. ES received a research grant from argenx. FP has received research grants from Janssen, Merck KGaA and UCB, and fees for serving on data monitoring committees in clinical trials with Chugai, Lundbeck and Roche, and preparation of expert witness statement for Novartis. FS received travel\/accommodation\/meeting expenses from Alexion Pharmaceuticals and argenx, received speaking honoraria and honoraria for attendance at advisory boards from Alexion Pharmaceuticals, argenx and UCB pharma. She received research grants from Alexion Pharmaceuticals and Octapharma and grants for administrative support for the German myasthenia gravis registry from the German Myasthenia gravis Society e.V. FV received compensation for travel, meeting attendance, consultation and speaking by Alexion Pharmaceuticals, UCB Pharma, argenx, and Biogen. JV has been involved MG research sponsored by the Princes Beatrix Fonds, Health Holland and consultancies for argenx, Alexion, and NMD Pharma. Reimbursements were received by the LUMC. He is the coinventor on patent applications based on MuSK-related research. The LUMC receives royalties for MuSK antibody assays. JP has received consulting fees from KYomed INNOV. MIL is funded by the NHS (Myasthenia and Related Disorders Service and National Specialised Commissioning Group for Neuromyelitis Optica, UK) and by the University of Oxford, UK. She has been awarded research grants from the UK association for patients with myasthenia (Myaware), Muscular Dystrophy UK and the University of Oxford. She has received speaker honoraria or travel grants from Biogen, Novartis, UCB Pharma, and the Guthy-Jackson Charitable Foundation. She serves on scientific or educational advisory boards for UCB Pharma, argenx, and Horizon Therapeutics (now Amgen Inc.). NEG has received honoraria as a consultant or speaker from argenx, Alexion, UCB, Merck, Roche, Immunovant, Johnson & Johnson, Huma, Denka, Dianthus, Grifols, Amgen, and Takeda. RM has received funding for Travel, Meeting attendance or Advisory Board participation from Alexion, argenx, Biomarin, Catalyst, SANOFI, Regeneron, Merck and UCB. SA has received consulting from UCB pharma, Alexion, argenx and research grant from UCB pharma. SS has received consulting from UCB pharma, Alexion, argenx and research grant from UCB pharma. The other authors (AS, GT, JG, LC, VS, and IM) have declared that no conflict of interest exists.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"115"}}