Participation

  • If you have been diagnosed with PNH or if a portion of your blood cells carries PNH characteristics, you may participate in the PNH Registry. It is important to remember that participating in the PNH Registry will not change or affect the usual care that you receive from your doctor and you will not be required to undergo any additional medical procedures or tests.

Question How to participate?

    Contact your treating doctor and inform him/her that you would like to participate in the PNH Registry.
  • You will receive the full information on the PNH Registry and be asked to sign a consent to participate in the PNH Registry.

Question What will happen once I am participating ?

  • You will be asked to complete a simple questionnaire in your language about your health and well-being at the beginning and then every 6 months for the duration of the Registry. It is planed that the PNH Registry will last at least 5 years.
  • The purpose of the questionnaire is to obtain your views about your general health, well-being, and the health care you receive.
  • Your doctor will collect into the Registry some of your medical information recorded in your medical file. This information will include your medical history, diagnosis and treatment.
  • All information collected from you and your doctor will be kept confidential.