PNH Registry
The PNH Registry is an ongoing global, observational, non-interventional study collecting
safety, effectiveness, and quality of life data on patients with PNH irrespective
of treatment status. The ultimate goal of the PNH Registry is to increase medical
understanding and knowledge about PNH and provide information that will help facilitate
diagnosis and optimize treatment of PNH patients. Specific objectives of the PNH
Registry include:
- To enhance the understanding of PNH demographics and natural history
- To capture the long-term outcomes of patients in order to better guide and assess
therapeutic interventions and the safety of Soliris®
(eculizumab)
- To serve as a global resource for PNH information
The PNH Registry is designed to protect the confidentiality of patient data in accordance
with all applicable privacy regulations. All physicians treating PNH patients can
participate, regardless of therapy. Learn more about the registry.