Long-Term Observational Registry of Adults with AQP4 Neuromyelitis Optica Spectrum Disorder Receiving Alexion C5 Inhibitor Therapies

What this Trial Is About

Researchers are conducting a long-term, multinational observational registry to collect information on patients with AQP4 Neuromyelitis Optica Spectrum Disorder NMOSD who are treated with Alexion Complement Component 5 Inhibitor Therapies C5IT. This registry aims to gather real-world data on clinical outcomes, safety, patient-reported outcomes, and quality of life to better understand the impact of these therapies on patients living with AQP4 NMOSD. Participants enrolled in the registry must already be receiving treatment with either eculizumab or ravulizumab, which are C5 inhibitor therapies used for chronic relapse prevention. The registry will collect retrospective data on medical history and treatment from one year before starting the therapy through enrollment, as well as ongoing data for up to five years following the last participants enrollment. During the study, participants clinical outcomes such as relapse rates will be monitored along with safety and quality-of-life assessments. Data collection will include treatment dosing history and relapse types, with annualized relapse rate as a primary measure. The overall participation period extends up to approximately five years, providing a comprehensive view of long-term treatment effects and patient experiences.

Registry of Patients With AQP4+ NMOSD Treated With Alexion C5 Inhibitor Therapies