Registry of Patients With AQP4+ Neuromyelitis Optica Spectrum Disorder Treated With Alexion Complement Component 5 Inhibitor Therapies

What this Trial Is About

This research focuses on patients diagnosed with Anti-Aquaporin 4 Antibody-Positive Neuromyelitis Optica Spectrum Disorder (AQP4+ NMOSD). It is a long-term, multinational, and multicenter observational registry designed to collect real-world data on clinical outcomes, safety, patient-reported outcomes (PROs), and quality of life (QoL) for patients treated with Alexion Complement Component 5 inhibitor therapies (ALXN-C5IT). The study aims to provide evidence on how these targeted therapies impact patients with AQP4+ NMOSD in everyday clinical practice. Participants are patients who are currently prescribed ALXN-C5IT treatments such as eculizumab or ravulizumab for chronic relapse prevention. The registry collects retrospective medical and treatment history data starting from one year before the initiation of ALXN-C5IT through the time of enrollment. Data collection will continue prospectively for approximately five years from the last participant's enrollment to monitor ongoing treatment outcomes and safety. During the study, participants' medical records will be reviewed for historical treatment and relapse information. Researchers will track annualized relapse rates and monitor clinical safety, along with collecting patient-reported quality of life measures. The registry does not involve assigning treatments but observes the real-world use and effects of ALXN-C5IT over time. Participants will be followed for up to five years to gather comprehensive long-term data.

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