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  • Baseline characteristics of patients with atypical haemolytic uraemic syndrome (aHUS): the Australian cohort in a global aHUS registry.

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    Ranganathan423293-Accepted.pdf (1.927Mb)
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    Accepted Manuscript (AM)
    Author(s)
    Soraru, Jacqueline
    Isbel, Nicole
    Wong, Germaine
    Coates, Patrick Toby
    Mantha, Murty
    Abraham, Abu
    Juneja, Rajiv
    Hsu, Danny
    Brown, Fiona
    Bose, Bhadran
    Mudge, David
    Carroll, Robert
    Kausman, Joshua
    Hughes, Peter
    Barbour, Thomas
    Durkan, Anne
    Mount, Peter
    Lee, Darren
    Larkins, Nicholas
    Ranganathan, Dwarakanathan
    Lim, Wai H
    Griffith University Author(s)
    Ranganathan, Dwarakanathan
    Year published
    2020
    Metadata
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    Abstract
    AIMS: To describe the baseline characteristics and treatment of Australian patients diagnosed with atypical haemolytic uraemic syndrome (aHUS) reported to the Global aHUS Registry. METHODS: Descriptive analysis of the Australian cohort with aHUS (n = 106) was undertaken for demographics, disease characteristics and prior treatment with eculizumab; comparing with the global cohort (n = 1688) for certain pre-specified disease characteristics. RESULTS: In Australia, almost two-thirds of patients diagnosed with aHUS were female and over 80% of patients were Caucasians, with similar proportions reported in the global cohort. Less ...
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    AIMS: To describe the baseline characteristics and treatment of Australian patients diagnosed with atypical haemolytic uraemic syndrome (aHUS) reported to the Global aHUS Registry. METHODS: Descriptive analysis of the Australian cohort with aHUS (n = 106) was undertaken for demographics, disease characteristics and prior treatment with eculizumab; comparing with the global cohort (n = 1688) for certain pre-specified disease characteristics. RESULTS: In Australia, almost two-thirds of patients diagnosed with aHUS were female and over 80% of patients were Caucasians, with similar proportions reported in the global cohort. Less than 6% of patients in the Australia and global cohorts were reported to have a history of autoimmune disease (4% vs 2%, respectively; P = 0.21) or cancer (5% vs 5%, respectively; P = 0.93), conditions that have been associated with secondary HUS. In the Australian cohort, 26% had received a kidney transplant and 68% of patients had received eculizumab. Kidneys were the most common organ involvement, followed by gastrointestinal tract (26%) and cardiovascular system (19%), with 35% of patients reported to have had at least 2 organs involved within 6 months prior to baseline visit or entry into the registry. Complement factor H (CFH) was the most common pathogenic complement gene variant in the Australian patients. CONCLUSION: Data from the aHUS registry confirms and defines region-specific disease characteristics among a selected group of Australian children and adults with aHUS reported to the registry. Ongoing and more inclusive data will provide further information about temporal trends and treatment outcomes, representing a unique opportunity for clinicians and researchers to further develop knowledge surrounding this rare disease.
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    Journal Title
    Nephrology
    DOI
    https://doi.org/10.1111/nep.13722
    Copyright Statement
    © 2020 Asian Pacific Society of Nephrology. This is the peer reviewed version of the following article: Baseline characteristics of patients with atypical haemolytic uraemic syndrome (aHUS): the Australian cohort in a global aHUS registry, Nephrology, 2020, which has been published in final form at https://doi.org/10.1111/nep.13722. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving (http://olabout.wiley.com/WileyCDA/Section/id-828039.html)
    Note
    This publication was entered as an advanced online version.
    Subject
    Clinical sciences
    atypical haemolytic uraemic syndrome
    complement gene mutation
    eculizumab
    kidney transplant
    registry
    Publication URI
    http://hdl.handle.net/10072/393737
    Collection
    • Journal articles

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