This is an observational single-arm descriptive cohort study based on the secondary use of data collected on iptacopan-treated patients with paroxysmal nocturnal hemoglobinuria (PNH) through the International PNH Interest Group (IPIG) PNH registry.
Age range
18 Years – 100 Years
Sex
ALL
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Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
Number of patients with infections caused by encapsulated bacteria
Timeframe: From initiation of iptacopan until discontinuation + 3 days, or end of follow-up, up to 5 years.
Cumulative incidence of infections (event probability as a function of time), caused by encapsulated bacteria
Timeframe: From initiation of iptacopan until discontinuation + 3 days, or end of follow-up, up to 5 years.
Number of patients with infections events per 100 participants -years (incidence rates) caused by encapsulated bacteria
Timeframe: From initiation of iptacopan until discontinuation + 3 days, or end of follow-up, up to 5 years.
Number of infections episodes per 100 patients -years (occurrence rates) caused by encapsulated bacteria
Timeframe: From initiation of iptacopan until discontinuation + 3 days, or end of follow-up, up to 5 years.