Dear Healthcare Professional,

Welcome to the PNH Registry information website.

We are a collaborative scientific board and advocacy group, the PNH Registry Executive Committee, leading the PNH Registry worldwide. Our role is to review results and outcomes collected in the PNH Registry, to define and lead international publications on the PNH Registry data, and to support PNH Registry-related national publications. We created this website to provide you with information about PNH and the PNH Registry.

The PNH Registry is a global, observational, non-interventional study following patients of any age with a diagnosis of PNH or with a detected PNH clone. The goals of the PNH Registry are to compile data on the progression of PNH and to optimize clinical decision making through enhanced understanding of PNH and its treatments. Data collected from every PNH patient are invaluable in providing insight into this rare disease and raising awareness within the PNH community. Currently the PNH Registry includes data from over 1,000 volunteer patients worldwide. We anticipate an increase in that number as we continue to enroll new sites and expand the PNH Registry into several new regions. Data collected in the PNH Registry are presented at congresses hosted by professional organizations such as the European Hematology Association (EHA), the International Society of Blood Transfusion (ISBT), and the American Society of Hematology (ASH).

We hope you join us in our effort to collect medical and patient quality of life data with the ultimate goal of gaining a better understanding PNH and improving its treatment. If you have questions or would like more information about the PNH Registry and how to join, please contact us.

Thank you for taking the time to visit our website.


The PNH Registry Executive Committee