Unmet needs in the care of patients with neuromyelitis optica spectrum disorder and myelin oligodendrocyte glycoprotein antibody associated disease: insights from Germany
Journal: Neurological Research and Practice; June 19, 2026
Author(s): Katrin Giglhuber, Alix Bertrand, Clarissa Zappe, Ingo Kleiter, Ilya Ayzenberg, Achim Berthele; Neuromyelitis Optica Study Group (NEMOS)
Gaps in NMOSD and MOGAD care in Germany: A survey of neurologists
This study aimed to explore how NMOSD and MOGAD are managed in Germany, what gaps exist in patient care, and what recommendations can be made for improvement.
A survey was distributed to 104 neurologists dealing with adult and pediatric patients from all across federal states in Germany. Questions addressed how patient care is organized, how NMOSD and MOGAD are diagnosed and recorded, how they are treated, how doctors use clinical guidelines, and what support or resources doctors need.
About 72 of the 104 physicians (70%) who took the survey were specialists in neuroimmunology. Most physicians reported that they have been seeing increasing numbers of NMOSD and MOGAD patients.
There were many differences in how the survey respondents addressed questions related to diagnosis. Almost half of the respondents did not know which type of antibody test was being used in their lab, and many labs were using older types of antibody tests (ELISA) rather than newer recommended cell-based tests.
Treatment practices also varied widely. Rituximab was the most preferred first treatment for aquaporin4 (AQP4)-antibody-positive NMOSD, AQP4-negative NMOSD, and MOGAD.
For AQP4-positive NMOSD, rituximab was followed by satralizumab, ravulizumab, and inebilizumab, in that order of popularity. For AQP4-negative NMOSD patients too, rituximab was followed by azathioprine and glucocorticoids in popularity. For MOGAD, oral glucocorticoids, intravenous immunoglobulins (IVIG), and azathioprine were selected as less popular first-treatment options after rituximab.
28 (42%) of 67 physicians dealing with NMOSD patients and 42 of 65 (65%) of physicians dealing with MOGAD patients mentioned that they had patients who remained untreated.
About 43% (33 of 88) physicians indicated that they would like additional support for the diagnosis and management of NMOSD and MOGAD, for example, through education and training, patient information materials, and structured guidance.
Related article: https://www.sumairafoundation.org/summaries/nmosd-and-mogad-in-latin-america-a-consensus-informed-regional-perspective/
Free Access: Full text