Information for Researchers

The Global PNH Patient Registry collects disease-specific natural history data about individuals with rare disorders, with the goal of improving the understanding of rare disorders and informing treatment development. Registry questionnaires were built from common data element standards and cover the following topics:

If you would like access to the Global PNH Patient Registry data for a research project, please contact our registry administrator at or AAMDSIF at Access to the Global PNH Patient Registry data is contingent upon project approval by the study Advisory Board.