Definition:

What is PNH?

  • Paroxysmal nocturnal haemoglobinuria (PNH) is an acquired disease that causes some or all of a body’s red blood cells (RBCs) to be destroyed by a process called haemolysis. PNH is a complex disease with signs and symptoms that are nonspecific, unpredictable, and often similar to those of other diseases.

What is the PNH Registry?

  • The PNH Registry is a prospective, international, non-interventional study that compiles important data on the natural history and management of patients diagnosed or with signs of PNH.

Following a post-marketing commitment requested by both the EMA (European Medicines Agency) and the FDA (Food and Drug Administration), the PNH Registry has been collaboratively designed and developed with a Scientific Advisory Board comprised of a team of international doctors and opinion leaders.

Information

The aim of the PNH Registry is to collect data to characterise the progression of PNH as well as associated clinical outcomes, mortality and morbidity. Results from the PNH Registry will provide a better understanding of PNH and its real-world outcomes.

Patient inclusion: All your patients with a PNH clone may be enrolled in the PNH Registry. Patient eligibility
Data collection: Clinical and patient reported outcomes will be collected from doctors and patients throughout the PNH Registry’s duration. Data collection
Registry duration: It is anticipated that patients who participate in the PNH Registry will be followed for at least 5 years.