Dear Healthcare Professional,
Welcome to the International 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 natural history 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 5,000 volunteer patients worldwide. Data collected in the PNH Registry are presented at congresses hosted by professional organizations such as the European Hematology Association (EHA) and the American Society of Hematology (ASH).
We are grateful to all physicians that collaborate, and also grateful to all your patients that accept to be part of the PNH registry in our effort to collect medical and patient quality of life data with the ultimate goal of gaining a better understanding of PNH and improving its treatment. If you have questions or would like more information about the PNH Registry, please contact us.
Thank you for taking the time to visit our website.
The PNH Registry Executive Committee