ArticleNeurology and therapy2023
Patient Pathway to Diagnosis of Myelin Oligodendrocyte Glycoprotein Antibody-Associated Disease (MOGAD): Findings from a Multinational Survey of 204 Patients.
Article in Neurology and therapy, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 11 papers, 1 of them a synthesis that pooled it.
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Who cites it
11 citing papers in PubMed, 1 synthesis or guideline pooled it, 13 citations in OpenAlex.
- A narrative review of the economic burden of myelin oligodendrocyte glycoprotein antibody-associated disease and analogous conditions.Frontiers in neurology · 2025Pooled it
- The Patient Experience of Myelin Oligodendrocyte Glycoprotein Antibody-Associated Disease Post-Diagnosis: Results from an International Survey.Neurology and therapy · 2026Article
- Application of the 2024 McDonald Criteria: Earlier Diagnosis and Avoiding Misdiagnosis of Multiple Sclerosis in a Global Setting.Neurology · 2026Review
- Psychiatric comorbidities cluster early after onset in MOGAD: a cross-sectional comparative study with MS and NMOSD.Journal of neurology, neurosurgery, and psychiatry · 2026Article
- Treatment patterns, access, and multidimensional burden of myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) in China: A nationwide cross-sectional study.Therapeutic advances in neurological disorders · 2026Article
- Patient Experience of Myelin Oligodendrocyte Glycoprotein Antibody-Associated Disease: Qualitative Patient and Clinician Interviews Informing the Development of a Conceptual Model.Neurology and therapy · 2025Article
- Management and burden of disease in people with myelin oligodendrocyte glycoprotein antibody-associated disease: data from an international, cross-sectional survey.Journal of neurology · 2025Article
- Misdiagnosis of Multiple Sclerosis: Past, Present, and Future.Current neurology and neuroscience reports · 2024Review
- Development Perspectives for Curative Technologies in Primary Demyelinating Disorders of the Central Nervous System with Neuromyelitis Optica Spectrum Disorder (NMOSD) and Myelin Oligodendrocyte Glycoprotein Antibody-Associated Disease (MOGAD) at the Forefront.Journal of personalized medicine · 2024Article
- Pathogenesis, Clinical Features, and Treatment of Patients with Myelin Oligodendrocyte Glycoprotein (MOG) Autoantibody-Associated Disorders Focusing on Optic Neuritis with Consideration of Autoantibody-Binding Sites: A Review.International journal of molecular sciences · 2023Review
- Quality of life is impaired in myelin oligodendrocyte glycoprotein antibody associated disease.Multiple sclerosis journal - experimental, translational and clinicalArticle
Corrections and comments
- Erratum issued
Authors and funding
6 authors at 3 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionMyelin 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.
methodsA 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.
resultsIn 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.
conclusionThis 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.