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Article History

Received: 23 March 2025

Accepted: 7 November 2025

First Online: 20 December 2025

Competing interests

: The authors declare no competing interests. This study received funding from the Beijing Novartis Pharma Co., Ltd (no grant no.). The funder had no influence on the design and conduct of the study; collection, management, analysis and interpretation of the data; or preparation, review or approval of the manuscript.

: This study was screened and approved by the Ethics Committee of Centre for Health Management and Policy Research, Shandong University (No. ECSHCMSDU20211103; approval data from 01/01/2022). This approval covered the entire study protocol. All research involving human participants was performed in strict accordance with the principles of the Declaration of Helsinki, the “Measures for Ethical Review of Biomedical Research Involving Humans”, and relevant national and institutional guidelines and regulations regarding ethical conduct in research.

: Informed consent was obtained from all study participants, including aHUS patients, their caregivers, and medical specialists. We informed each participant of their rights, the purpose of the study and to safeguard their personal information. Informed consent was obtained from each participant on the day of their recruitment, immediately before the survey commenced. The data collection, and therefore the acquisition of consent, took place between January 13th to August 25th 2023.

: Patients signed informed consent regarding publishing their data.