Describe the myelin oligodendrocyte glycoprotein antibody disease (MOGAD) patient journey to diagnosis.

MOGAD is an autoimmune rare disease of the central nervous system, with no approved treatment. Patient journey insights are limited.

The Adelphi MOGAD Disease Specific Program collected real world data from neurologists and their patients through cross-sectional surveys (June to November 2022) across France, Germany, Spain, Italy, the UK and the USA. Neurologists managing ≥1 patients with MOGAD completed a patient record form (PRF) for each patient (≤10 patients). Following informed consent, patients with completed PRFs were invited to fill in a patient self-completion form (PSC). Patients ≥18 years diagnosed with MOGAD were included.

Overall, 74 physicians completed 268 PRFs, with 66 patients completing PSCs. The PRF data showed patients had a median age of 36 years; most were White (85%) and female (65%). Roughly half (136/268, 51%) visited a neurologist as first point of contact because of initial MOGAD symptoms, which were most often optic (182/268, 68%) and/or myelitic (175/268, 65%). Subsequently, 64% (172/268) of patients initially received an alternative diagnosis that was later attributed to MOGAD, most commonly optic neuritis, transverse myelitis or multiple sclerosis. Physician-reported median time from alternative diagnosis to MOGAD diagnosis was 31 days and from first consultation to MOGAD diagnosis was 42 days. Physicians also reported that all patients underwent a MOG antibody test to aid MOGAD diagnosis. Negative serology for AQP4 antibodies was the most common prompt (165/268, 62%) for a MOGAD antibody test. Nearly all patients were ultimately diagnosed by a neurologist (262/268, 98%).

Almost 2/3 of patients initially received an alternative diagnosis that was later attributed to MOGAD, suggesting suboptimal early disease management. Better MOGAD symptom awareness may help to improve the diagnosis pathway and support patient outcomes. Analysis funded by UCB Pharma.