An International Pediatric-Onset Opsoclonus-Myoclonus Ataxia Syndrome Registry and Clinical Research Network: Development, Progress, and Vision.

Opsoclonus myoclonus ataxia syndrome (OMAS) is a rare neuroimmunological disorder that affects 1 in 5 million children per year,1 typically presenting in the second year of life with chaotic eye movements (opsoclonus), muscle jerks (myoclonus), impaired motor coordination (ataxia) and irritability.2 While previous studies suggest that outcomes tend to improve with early intensive immunosuppression 3,4,5, a steering committee of pediatric neurologists and oncologists involved with the treatment of OMAS devised plans to organize an expanded research group from 2018-2020, and establish an international pediatric-onset opsoclonus myoclonus ataxia syndrome (POOMAS) registry.