Management and burden of disease in people with myelin oligodendrocyte glycoprotein antibody-associated disease: data from an international, cross-sectional survey

TL;DR

This study explores the challenges in diagnosing and managing a rare neurological disease called MOGAD, showing that patients face delays and suboptimal care, which affects their quality of life and work.

Contribution

The study provides real-world data on MOGAD diagnosis and management challenges, highlighting the need for better diagnostic and treatment approaches.

Findings

Patients with MOGAD often receive preliminary or alternative diagnoses before confirmation.

It takes an average of about two months from symptom onset to a definitive MOGAD diagnosis.

Most patients are prescribed treatments, but quality of life and work productivity remain impaired.

Abstract

There are challenges in the diagnosis of myelin-oligodendrocyte glycoprotein (MOG) antibody-associated disease (MOGAD), and a current lack of targeted treatments. This study investigated the disease management and burden of MOGAD in a real-world setting.

Data were derived from the Adelphi MOGAD Disease Specific Programme (DSP)™, a cross-sectional survey of neurologists and their consulting patients with MOGAD, conducted in Europe and the United States in 2022. Neurologists reported on patient demographics, clinical characteristics, disease management history, treatments prescribed and burden of disease. Patients voluntarily reported on their perceptions on burden of disease. All analyses were descriptive.

Overall, 74 neurologists provided data for 268 consecutively consulting patients with MOGAD, of whom 66 completed voluntary questionnaires. Sixty four percent of patients received a preliminary/alternative diagnoses, and patients underwent a median (Q1, Q3) of 12.0 (9.0; 19.0) blood tests, assessments and/or scans to confirm MOGAD diagnosis. The median (interquartile range, Q1, Q3) physician-reported time from symptom onset to preliminary/alternative diagnosis was 19.0 (0.0; 59.0) days, and from symptom onset to definitive diagnosis 64.0 (31.0; 150.2) days. At time of the survey, 91.8% and 83.5% of patients were prescribed acute and maintenance treatment, respectively. Symptomatic burden remained moderately high, with patients reporting quality of life (QoL) and work productivity impairments.

Patients with MOGAD may suffer from challenges in diagnosis, and disease management remains suboptimal, with burden to patients affecting their QoL and ability to work. Both the diagnosis and treatment of MOGAD should continue to be the subject of further research.

The online version contains supplementary material available at 10.1007/s00415-025-13233-7.

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