Details

Details

Title Paroxysmal Hemoglobinuria Registry

IRB ALEX1Z11

CC 11-245

Hospital Main Campus

Stage N/A

Phase N/A

Disease Paroxysmal Nocturnal Hemoglobinuria (PNH)

Drug Soliris

Description

Description

Primary
  1. The PNH registry will collect data to evaluate safety data specific to the use of Soliris
  2. The PNH registry will collect data to characterize the progression of PNH as well as clinical outcomes, mortality and morbidity in Soliris and non-Soliris treated patients
Secondary
  1. Raising PNH awareness in the medical community and subject/potential subject population
Inclusion Criteria

Inclusion Criteria

  1. PNH patients of any age, including minors, that are receiving Soliris or
  2. PNH patients of any age, including minors, that are not on Soliris treatment
  3. NOTE: PNH patients include all patients with a diagnosis of PNH or a detected PNH clone as defined in section 7.1
Exclusion Criteria

Exclusion Criteria

Exclusion Criteria Not Available