Paroxysmal Nocturnal Hemoglobinuria (PNH) Registry
The PNH Registry is a prospective, multi-center, multi-national, non-interventional study that has been designed to capture safety and effectiveness data for Soliris, as well as to compile data on the natural history and management of patients diagnosed with PNH. The Registry will enroll PNH patients treated or not with Soliris. It is anticipated that patients will be followed at least for 5 years. Data collected in the Registry will be reported to the FDA and the EMA. By participating in the Registry, you are agreeing to allow the Registry Team to collect personal and identifiable information about you including your address, health, race and ethnicity, quality of life, the treatment of your PNH, and/or your treatment with Soliris. Data will be reported directly from you and from your physician.