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IPIG 2025 | Aims of the new IPIG registry: advancing the understanding of PNH biology and treatment
In this video, Jeff Szer, MBBS, FRACP, Peter MacCallum Cancer Centre, Melbourne, Australia, briefly introduces the new IPIG registry, an initiative that aims to understand the natural history of paroxysmal nocturnal hemoglobinuria (PNH) in the current therapeutic era and to investigate the effect of therapy on patients with the disease. Prof. Szer highlights that the registry’s objective is to contribute independent data to the knowledge base surrounding this rare disease. This interview took place at the 2nd International PNH Interest Group (IPIG) Conference in Paris, France.
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Transcript
I am to present our new registry, which has been talked about for a long time but is now up and running and accruing patients. The aim of the registry is to really establish the natural history of PNH in the modern era and secondarily to look at the effect of therapy and the sorts of patients that do get and don’t get treatment. So we’re aiming to really build up the knowledge base for this rare disease in a way that’s independent of individual interests...
I am to present our new registry, which has been talked about for a long time but is now up and running and accruing patients. The aim of the registry is to really establish the natural history of PNH in the modern era and secondarily to look at the effect of therapy and the sorts of patients that do get and don’t get treatment. So we’re aiming to really build up the knowledge base for this rare disease in a way that’s independent of individual interests.
This transcript is AI-generated. While we strive for accuracy, please verify this copy with the video.
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Disclosures
Financial relationship (not shares) with Alexion, Sobi, Novartis.
