Hungarian consensus recommendations for diagnosis and treatment of neuromyelitis optica spectrum disorder

Abstract Background Although neuromyelitis optica spectrum disorder (NMOSD) is a rare autoimmune disease worldwide, early diagnosis and treatment are crucial for reducing permanent neurological disability. Four monoclonal antibodies (mAbs) – eculizumab, ravulizumab, satralizumab, and inebilizumab – have shown significant efficacy in randomized controlled trials in recent years. However, other immunosuppressive drugs, such as azathioprine, mycophenolate mofetil, rituximab, and tocilizumab, are also widely used off-label. In Hungary, access to the approved on-label mAb treatments is limited. Although treatment reimbursement policies vary across countries, regional or national guidelines can assist clinicians in effectively managing patients. Consequently, as an initiative of the Hungarian Neuroimmunology Society, 17 national neuroimmunology experts reached a consensus on eight recommendations using the Delphi method. Results Strong agreement (> 80%) was reached on six recommendations after two rounds (including general recommendations, off-label and approved mAb therapies, therapeutic switching, and pregnancy), on one recommendation after three rounds (treatment of relapses), and on another recommendation after four rounds (double-negative NMOSD). Conclusions we present this nationwide consensus protocol, aimed at standardizing the care of people with NMOSD in Hungary and fostering dialogue between healthcare regulators and clinicians.

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Publication Details

Journal
Orphanet Journal of Rare Diseases
Published
2026-10-09
DOI
https://doi.org/10.1186/s13023-026-04657-z
Primary Topic
Multiple Sclerosis Research Studies
Type
article
Field-Weighted Citation Impact
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article

Hungarian consensus recommendations for diagnosis and treatment of neuromyelitis optica spectrum disorder

Gábor Lovas, Gábor Rum, István Deme, Anita Trauninger et al.
Orphanet Journal of Rare Diseases
Multiple Sclerosis Research Studies
article

Hungarian consensus recommendations for diagnosis and treatment of neuromyelitis optica spectrum disorder

Gábor Lovas, Gábor Rum, István Deme, Anita Trauninger, Anna Iljicsov, Andrea Mike, Zita Bíró, Zsolt Mezei, Csilla Rózsa, Piroska Imre, Cecília Rajda, Tünde Csépány, Zita Jobbágy, Péter Ács, Magdolna Simó, G Jakab, Zsolt Illes
article en

Abstract

Abstract Background Although neuromyelitis optica spectrum disorder (NMOSD) is a rare autoimmune disease worldwide, early diagnosis and treatment are crucial for reducing permanent neurological disability. Four monoclonal antibodies (mAbs) – eculizumab, ravulizumab, satralizumab, and inebilizumab – have shown significant efficacy in randomized controlled trials in recent years. However, other immunosuppressive drugs, such as azathioprine, mycophenolate mofetil, rituximab, and tocilizumab, are also widely used off-label. In Hungary, access to the approved on-label mAb treatments is limited. Although treatment reimbursement policies vary across countries, regional or national guidelines can assist clinicians in effectively managing patients. Consequently, as an initiative of the Hungarian Neuroimmunology Society, 17 national neuroimmunology experts reached a consensus on eight recommendations using the Delphi method. Results Strong agreement (> 80%) was reached on six recommendations after two rounds (including general recommendations, off-label and approved mAb therapies, therapeutic switching, and pregnancy), on one recommendation after three rounds (treatment of relapses), and on another recommendation after four rounds (double-negative NMOSD). Conclusions we present this nationwide consensus protocol, aimed at standardizing the care of people with NMOSD in Hungary and fostering dialogue between healthcare regulators and clinicians.

Orphanet Journal of Rare Diseases
Semmelweis University (HU), University of Debrecen (HU), University of Southern Denmark (DK), University of Szeged (HU), Somogy Megyei Kaposi Mór Oktató Kórház (HU), Szent Borbála Kórház (HU), Bács-Kiskun Megyei Kórház (HU), Toldy Ferenc Kórház (HU), Uzsoki Hospital (HU), Veszprémi Érseki Hittudományi Fõiskola (HU), Petz Aladár Megyei Oktató Kórház (HU), Jahn Ferenc Dél-Pesti Kórház és Rendelőintézet (HU), Kistarcsai Flór Ferenc Kórház (HU), University of Pecs (HU)
Openalex Percentile: Top 12%
Multiple Sclerosis Research Studies
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