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Article History

Received: 20 December 2022

Accepted: 7 May 2023

First Online: 18 May 2023

Declarations

:

: Alexion, AstraZeneca Rare Disease was involved in the study design; in the collection, analysis, and interpretation of data; in the writing or revision of the report; and in the decision to submit the article for publication.

: The Registry protocol was approved by an ethics committee for each site, and the Registry is being conducted in compliance with the International Council for Harmonisation Guideline for Good Clinical Practice.

: The institutional review boards (or equivalent) of participating centers approved the Registry, and written informed consent was provided by all patients before study entry.

: David Dingli has received honoraria and consulting fees from Alexion, AstraZeneca Rare Disease, Apellis, Novartis and Sanofi, and participates in the International PNH Registry (for Mayo Clinic, Rochester) for Alexion, AstraZeneca Rare Disease. Jaroslaw P. Maciejewski has received consulting fees from Alexion, AstraZeneca Rare Disease; Apellis Pharmaceuticals; and Ra Pharma. He has also received speaker fees from and is a member of the Executive Committee of the International PNH Registry for Alexion, AstraZeneca Rare Disease. Loree Larratt has received honoraria and research support (for the laboratory at the University of Alberta, for ADAMTS13 testing) from Alexion, AstraZeneca Rare Disease. Ronald S. Go participates in the International PNH Registry (for Mayo Clinic, Rochester) for Alexion, AstraZeneca Rare Disease. Britta Höchsmann has received honoraria, consulting fees, and research support (to University Hospital of Ulm) from Alexion, AstraZeneca Rare Disease, Novartis, Apellis Pharmaceuticals, Sobi, and Roche. Ke Zu was an employee of Alexion, AstraZeneca Rare Disease at the time of the study, and is currently affiliated with Merck & Co., Inc. Philippe Gustovic is an employee and stockholder of Alexion, AstraZeneca Rare Disease. Alexander D. Kulagin has received honoraria and consulting fees from Alexion, AstraZeneca Rare Disease, Novartis, and GENERIUM JSC, and is a member of the Executive Committee of the International PNH Registry for Alexion, AstraZeneca Rare Disease.