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Data Collection

  • Data collection via electronic case report form: comprehensive – not burdensome
  • 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 reported directly from you and from the patient, at enrolment and approximately every 6 months thereafter. The type of data you will need to enter will include: demographics, medical history, PNH diagnosis, flow cytometry results, symptomatology, clinical outcomes, safety events of interest and pregnancy.
  • Patients will complete personal questionnaires every 6 months.
  • Safety events are to be reported through your standard pharmacovigilance channels and you will need to complete the relevant eCRF pages every 6 months.

  • The PNH Registry is currently being implemented in the following countries:

ArgentinaAustraliaAustriaBelgiumCanada
ColombiaCzech RepublicDenmarkFinlandFrance
GermanyGreeceHong KongIrelandIsrael
JapanLuxembourgMalaysiaMexicoNetherlands
New ZealandNorwayPortugalRussiaSaudi Arabia
SingaporeSloveniaSouth KoreaSpainSweden
SwitzerlandTaiwanThailandTurkeyUnited Kingdom
United States