PNH Patient Registry

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

• Demographics
• Medical history
• Treatment and disease progression
• Quality of life
• Clinical trial participation

If you would like access to the Global PNH Patient Registry data for a research project, please contact our registry administrator at nordregistry@rarediseases.org or AAMDSIF at pnhregistry@aamds.org. Access to the Global PNH Patient Registry data is contingent upon project approval by the Registry Medical Advisory Committee.