Mapping myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) and neuromyelitis optica spectrum disorders (NMOSD): A global review of publicly listed patient disease registries and databases

BACKGROUND: Real-world data are crucial to improving care for patients with rare diseases. OBJECTIVES: To develop the first global map of myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) and neuromyelitis optica spectrum disorders (NMOSD) patient registries/databases. Registries/databases were identified through rare disease portals, registry websites, and other sources, and surveyed. RESULTS: = 26), the majority were established within the past 15 years and reported being self-funded. Most collect diagnostic, clinical, and laboratory data. Major objectives included supporting scientific research and advancing disease understanding. CONCLUSIONS: Despite cost, time, resource, and data quality challenges, registries/databases provide important insights into addressing unmet needs in MOGAD and NMOSD.