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INTRODUCTION: Myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) is a rare demyelinating disorder of the central nervous system. Despite increased recognition of MOGAD as a distinct disease and the availability of sensitive methods of MOG antibody testing, diagnostic challenges remain. We conducted a survey to explore the patient experience from the start of symptoms to final MOGAD diagnosis. METHODS: A 23-question online survey (including multiple-choice and free-text responses) covering symptom history, healthcare interactions and impact of diagnosis was emailed to people living with MOGAD by The MOG Project patient advocacy group. People living with MOGAD could share the survey with their caregivers. Anonymised responses were analysed. RESULTS: In total, 204 people living with MOGAD or their caregivers from 21 countries completed the survey; most respondents were from North America. Age of symptom onset ranged from 1 to 66 (median 28) years. Symptoms that prompted patients to seek medical care included blurred vision/loss of vision (58.2%), eye pain (35.8%) and difficulty walking (25.4%). Patients most frequently presented to emergency care physicians (38.7%) and primary care doctors (26.0%), with the MOGAD diagnosis most often made by general neurologists (40.4%) or neuro-immunologists (30.0%). Patients saw a median of four doctors before diagnosis, with 26.5% of patients seeing at least six doctors. Although 60.6% of patients received a MOGAD diagnosis within 6 months of experiencing initial health problems, 17.7% experienced a ≥ 5-year delay. More than half of patients (55.4%) received an alternative primary diagnosis before final MOGAD diagnosis. Most respondents (60.6%) reported receiving insufficient information/resources at the time of MOGAD diagnosis. Diagnostic delay was associated with long-term negative consequences for physical health. CONCLUSION: This survey provides unique insights from people living with MOGAD and their caregivers that could help address the challenges faced in the pathway to final MOGAD diagnosis.

Original publication




Journal article


Neurol Ther

Publication Date



Demyelination, Diagnosis, Myelin oligodendrocyte glycoprotein (MOG), Myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD), Neurology, Patient perspective, Survey, Symptoms