Unmet needs in the care of patients with neuromyelitis optica spectrum disorder and myelin oligodendrocyte glycoprotein antibody associated disease: insights from Germany.

Abstract

Background: Neuromyelitis optica spectrum disorder (NMOSD) and myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) are rare autoimmune disorders. Their true prevalence in Germany is unknown and can only be estimated from heterogeneous international data. Assuming 1-3 cases per 100,000 people for each disease suggests several thousand affected individuals nationwide, yet the German Neuromyelitis Optica Study Group (NEMOS) registry currently holds records of only about 1,300 patients seen in specialised centres. Numbers and care structures outside such facilities remain largely unknown. This survey aimed to assess the current state of NMOSD and MOGAD care in Germany, identify gaps, and inform future care strategies.

Methods: An online questionnaire aimed at neurologists and neuropaediatricians was distributed via NEMOS, the German Neurological Society (DGN), the Professional Association of German Neurologists (BVDN), and the German Network for Research on Autoimmune Encephalitis (GENERATE) from March to May 2025. Questions addressed care structures, diagnostics, coding, treatment, guideline use, and practitioners' needs.

Results: A total of 104 physicians from all German federal states participated. Half worked in university hospitals, the remainder in other clinics and outpatient settings. Most were specialised in neuroimmunology (70.2%). Many reported an increase in patient numbers for NMOSD (55.8%) and MOGAD (77.4%). Diagnostic practices revealed significant inconsistencies: almost half of the respondents were unaware of their referral laboratory's antibody assays, and ELISA remained in use despite clear recommendations for cell-based assays. ICD-10 coding varied widely. Off-label rituximab was most frequently used for first-line therapy of AQP4-antibody-positive NMOSD (69.6%), compared to satralizumab (57.1%), ravulizumab (55.4%) and inebilizumab (50.0%). AQP4-antibody-negative NMOSD was mainly treated with rituximab (87.0%). Also in MOGAD, rituximab was frequently used (by 58.9%), yet paediatricians preferred glucocorticoids and intravenous immunoglobulins. 69.6% initiated treatment for MOGAD after the first attack. Notably, 41.8% of physicians reported untreated NMOSD and 64.6% untreated MOGAD patients. Most respondents relied on national guidelines; 43.2% expressed a need for further education and patient information.

Conclusions: Our findings highlight substantial heterogeneity in the diagnosis and treatment of NMOSD and MOGAD in Germany with potential implications for patient outcomes. This underscores the need for harmonised procedures and targeted educational resources to improve diagnostic reliability, treatment equity, and overall quality of care.