Data Collection

  • Data collection via electronic case report form.
  • The PNH Registry maintains strict confidentiality of patient data in accordance with all applicable privacy regulations. Data are entered via a secure web portal.

Data Collected:
  • Data will be collected from you and from your patients, at enrollment and approximately every 6 months thereafter (as applicable to the specific patient and the standard management practices at a given institution). The type of data you will need to enter will include: demographics, medical history, PNH diagnosis, flow cytometry results, clinical outcomes, quality of life and pregnancy status.
  • Patients will complete questionnaires every 6 months.
  • For patients being treated specific data will be collected: Pregnancy, lactation, and follow-up, Serious adverse events, Meningococcal Vaccination status, Dosing information and Special events.

  • As of today September 2022, the PNH Registry is ongoing in the following countries:

FranceGermanyJapanNetherlandsSouth Korea
United KingdomUnited States