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Article History

Accepted: 29 July 2025

First Online: 23 August 2025

Declarations

:

: Data collection was undertaken by Adelphi Real World as part of an independent survey, entitled the Adelphi Real World PNH DSP. Alexion did not influence the original survey through either contribution to the design of questionnaires or data collection. The DSP is a wholly owned Adelphi Real World product. Alexion is one of multiple subscribers to the DSP. Publication of survey results was not contingent on the subscriber’s approval or censorship of the manuscript.

: Xuefei Liu is a previous employee of AstraZeneca China. All authors declare no competing financial interests related to this work.

: All data, i.e. methodology, materials, data and data analysis, that support the findings of this survey are the intellectual property of Adelphi Real World. All requests for access should be addressed directly to Yasmin Taylor at yasmin.taylor@omc.com. Yasmin Taylor is an employee of Adelphi Real World.

: Patients provided informed consent to take part in the survey using a checkbox. The PNH DSP was submitted to the Pearl Institutional Review Board (study protocol number no. 21-ADRW-127/AG9119), and exemption from ethical approval was granted.

: Not applicable.

: Not applicable.

: All authors were contributors in writing the manuscript. Rong Fu, Hui Liu, Pin-Tzu Su, Xuefei Liu, Karl-Johan Myrén, Francesca Gatta and Elmira Lechat contributed to the study conceptualization and design. Lucy Earl, Yasmin Taylor and Alice Simons contributed to data analysis and interpretation. All authors read and approved the final manuscript.