Definitions:

What is PNH?

  • PNH is an unpredictable but serious blood disorder. Although rare, PNH can have a considerable impact on everyday life and affect normal day-to-day activities. It may cause thrombosis, renal insufficiency, end organ damage and increased mortality. 1,2,3

What is a Registry?

  • A registry is a collection of health information from patients diagnosed with a particular disorder or disease, or treated with already commercialized drug. The information is collected by the doctors from patient’s medical records. No additional visits, tests or analysis are undergone by the patient participating in a Registry. The patient participating in a Registry may only be asked to complete from time to time a health questionnaire during his / her visit at the doctor’s.

What is the PNH Registry?

  • The aim of the PNH Registry is to gather information about PNH from patients around the world to help understand this rare disease and to improve its treatments or therapies.
  • Because PNH is rare, it is difficult for doctors to collect and share information to improve their treatments or therapies. Therefore, the PNH Registry has been set up.

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The PNH Registry will hopefully allow doctors to gain a better understanding of PNH, how it progresses and the best way to provide treatment.

  • The PNH Registry has been started specifically to gather detailed information on PNH and treatment of patients with PNH. It is hoped that this information will improve treatment for patients already diagnosed and those who might develop PNH in the future.