{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,3]],"date-time":"2026-08-03T23:27:39Z","timestamp":1785799659766,"version":"3.56.0"},"reference-count":26,"publisher":"Oxford University Press (OUP)","issue":"9","license":[{"start":{"date-parts":[[2026,2,6]],"date-time":"2026-02-06T00:00:00Z","timestamp":1770336000000},"content-version":"vor","delay-in-days":112,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2025,10,17]],"date-time":"2025-10-17T00:00:00Z","timestamp":1760659200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2025,10,17]],"date-time":"2025-10-17T00:00:00Z","timestamp":1760659200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2025,12,1]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Atypical hemolytic uremic syndrome (aHUS) usually results from an overactivation of the alternative complement pathway. As large clinical trials are scarce, patient registries can partially fill the knowledge gap on patient characteristics, management, and outcomes. We here describe the baseline clinical and genetic characteristics as well as the management of all Belgian patients enrolled in the Global aHUS Registry at data cut-off.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>This observational study prospectively and retrospectively collected data (data cut-off: December 26, 2022) from patients of all ages with a clinical diagnosis of aHUS, irrespective of treatment.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>A total of 121 Belgian patients were registered in the Global aHUS Registry, resulting in a prevalence of 10.4 aHUS patients per million inhabitants, with a higher proportion of females affected (57.9% vs 42.1% of males). Among the 109 patients tested for at least one variant and\/or anti-complement factor H (CFH) antibodies, 36 were positive for a pathogenic complement gene variant associated with aHUS (n\u2009=\u200929) and\/or seropositive for anti-CFH antibodies (n\u2009=\u200914). The most common variants affected CFH, C3 and CD46. The higher proportion of complement gene variants in treated women versus men was not related to a specific gene.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>This study strengthens the real-world evidence on aHUS and adds to previously published Global aHUS Registry data. In addition, it provides insights into the differential epidemiology of the disease in Belgium and demonstrates the increased susceptibility of women to aHUS across the whole spectrum of recognized complement gene variants.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Graphical abstract<\/jats:title>\n                    <jats:p\/>\n                  <\/jats:sec>","DOI":"10.1007\/s40620-025-02366-7","type":"journal-article","created":{"date-parts":[[2025,10,17]],"date-time":"2025-10-17T01:26:37Z","timestamp":1760664397000},"page":"2841-2850","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["Clinical and genetic characteristics of patients diagnosed with atypical hemolytic uremic syndrome (aHUS): epidemiological data from the Belgian cohort of the Global aHUS Registry"],"prefix":"10.1093","volume":"38","author":[{"given":"Annick","family":"Massart","sequence":"first","affiliation":[{"name":"https:\/\/ror.org\/01hwamj44 grid.411414.5 0000 0004 0626 3418 Department of Nephrology Antwerp University Hospital Antwerp Belgium 1"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Laurent","family":"Weekers","sequence":"additional","affiliation":[{"name":"https:\/\/ror.org\/00afp2z80 grid.4861.b 0000 0001 0805 7253 Department of Nephrology University of Li\u00e8ge, CHU Li\u00e8ge Li\u00e8ge Belgium 2"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kathleen J.","family":"Claes","sequence":"additional","affiliation":[{"name":"https:\/\/ror.org\/05f950310 grid.5596.f 0000 0001 0668 7884 Department of Nephrology and Renal Transplantation Leuven University Hospital Louvain Belgium 3"},{"name":"https:\/\/ror.org\/05f950310 grid.5596.f 0000 0001 0668 7884 KU Leuven Department of Microbiology and Immunology, Laboratory of Nephrology Louvain Belgium 4"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tess","family":"Van Meerhaeghe","sequence":"additional","affiliation":[{"name":"https:\/\/ror.org\/05j1gs298 grid.412157.4 0000 0000 8571 829X Department of Nephrology H\u00f4pital Universitaire de Bruxelles, Erasme Brussels Belgium 5"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Evelien","family":"Snauwaert","sequence":"additional","affiliation":[{"name":"https:\/\/ror.org\/00xmkp704 grid.410566.0 0000 0004 0626 3303 Department of Pediatric Nephrology Ghent University Hospital Ghent Belgium 6"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Djalila","family":"Mekahli","sequence":"additional","affiliation":[{"name":"https:\/\/ror.org\/05f950310 grid.5596.f 0000 0001 0668 7884 Department of Pediatric Nephrology and Organ Transplantation Leuven University Hospitals Louvain Belgium 7"},{"name":"https:\/\/ror.org\/05f950310 grid.5596.f 0000 0001 0668 7884 PKD Research Group, Laboratory of Ion Channel Research, Department of Cellular and Molecular Medicine KU Leuven Louvain Belgium 8"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Eric","family":"Goffin","sequence":"additional","affiliation":[{"name":"https:\/\/ror.org\/03s4khd80 grid.48769.34 0000 0004 0461 6320 Department of Nephrology Cliniques universitaires Saint-Luc, Universit\u00e9 Catholique de Louvain Brussels Belgium 9"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Laure","family":"Collard","sequence":"additional","affiliation":[{"name":"https:\/\/ror.org\/002atrf55 grid.433083.f 0000 0004 0608 8015 Pediatric Department CHC Montl\u00e9gia Li\u00e8ge Belgium 10"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nathalie","family":"Godefroid","sequence":"additional","affiliation":[{"name":"https:\/\/ror.org\/03s4khd80 grid.48769.34 0000 0004 0461 6320 Pediatric Department Cliniques universitaires Saint-Luc, Universit\u00e9 Catholique de Louvain Brussels Belgium 11"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Brigitte","family":"Adams","sequence":"additional","affiliation":[{"name":"https:\/\/ror.org\/05f950310 grid.5596.f 0000 0001 0668 7884 Department of Pediatric Nephrology and Organ Transplantation Leuven University Hospitals Louvain Belgium 7"},{"name":"https:\/\/ror.org\/01t5yh786 grid.412209.c 0000 0004 0578 1002 Queen Fabiola Children\u2019s University Hospital Brussels Belgium 12"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Stefan","family":"Van Cauwelaert","sequence":"additional","affiliation":[{"name":"https:\/\/ror.org\/038f7y939 grid.411326.3 0000 0004 0626 3362 Department of Nephrology and Transplantation Universitair Ziekenhuis Brussels Brussels Belgium 13"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Koenraad","family":"Van Hoeck","sequence":"additional","affiliation":[{"name":"https:\/\/ror.org\/01hwamj44 grid.411414.5 0000 0004 0626 3418 Department of Pediatrics Antwerp University Hospital Antwerp Belgium 14"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sebastien","family":"Block","sequence":"additional","affiliation":[{"name":"Alexion Pharma Belgium Brussels Belgium 15"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Imad","family":"Al-Dakkak","sequence":"additional","affiliation":[{"name":"https:\/\/ror.org\/031ywxc85 grid.422288.6 0000 0004 0408 0730 Global Epidemiology Alexion Pharmaceuticals, Inc Boston MA USA 16"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Karin","family":"Dahan","sequence":"additional","affiliation":[{"name":"https:\/\/ror.org\/03s4khd80 grid.48769.34 0000 0004 0461 6320 Department of Nephrology Cliniques universitaires Saint-Luc, Universit\u00e9 Catholique de Louvain Brussels Belgium 9"},{"name":"https:\/\/ror.org\/00zam0e96 grid.452439.d 0000 0004 0578 0894 Institut de Pathologie et de G\u00e9n\u00e9tique, Centre de G\u00e9n\u00e9tique Gosselies Belgium 17"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Patrick","family":"Stordeur","sequence":"additional","affiliation":[{"name":"https:\/\/ror.org\/01r9htc13 grid.4989.c 0000 0001 2348 0746 Laboratoire d\u2019Immunologie (LHUB) Belgian National Reference Center for the Complement System, H\u00f4pital Universitaire de Bruxelles Brussels Belgium 18"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Johan","family":"Vande Walle","sequence":"additional","affiliation":[{"name":"https:\/\/ror.org\/00xmkp704 grid.410566.0 0000 0004 0626 3303 Department of Pediatric Nephrology Ghent University Hospital Ghent Belgium 6"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","published-online":{"date-parts":[[2025,10,17]]},"reference":[{"key":"2026020606015317500_CR1","doi-asserted-by":"publisher","first-page":"15","DOI":"10.1007\/s00467-015-3076-8","article-title":"An international consensus approach to the management of atypical 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February 2025","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"12 July 2025","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"17 October 2025","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Annick Massart received consulting fees from Alexion and Hansa, and\u00a0support for attending meetings from Hansa (through her institution). She participated on a Data Safety Monitoring Board or Advisory Board for Novartis (through her institution). Laurent Weekers received support for attending meetings from AstraZeneca and participated in Advisory Boards for Alexion, Hanza, and Amicus. Kathleen J Claes received consulting fees from Alexion, Amgen, Novartis, and Sobi; honoraria for lectures from AstraZeneca; support for attending meetings and\/or travel from Bayer. She participated on a Data Safety Monitoring Board or Advisory Board for Novartis and has a leadership or fiduciary role in other board, society, committee or advocacy groups for the Belgian Society of Nephrology. She is a member of the European Reference Network for Rare Kidney Diseases (ERKNet). Evelien Snauwaert is the beneficiary of a budget from the Fonds voor Innovatie en Klinisch Onderzoek (FIKO) type III from the Ghent University Hospital, received support from Alexion for meetings\/travel and participated to a Data Safety Monitoring Committee\/Advisory Board from Alexion. She is a member of the ERKNet. Djalila Mekahli received grants from Otsuka and Galapagos. She is supported by the Research Foundation Flanders (FWO; G0C8920N) and received a clinical senior research grant (1804123N). Laure Collard received consulting fees for an advisory board from Alexion (through her institution), and from Anlynam and Chiesi (through her company); consulting fees for symposium moderation from Anlynam and Chiesi (through her company); payment for lectures from Anlynam and Sandoz (through her company); payment for expert testimony from Twinpharma (through her company); financial support for attending meetings from Chiesi. Nathalie Godefroid participated to a Data Safety Monitoring Board or Advisory Board for Alexion. Koenraad Van Hoeck received honoraria for lectures from Thomas More Highschool (through his institution). Sebastien Block is an employee of Alexion Pharmaceuticals. Imad Al-Dakkak was an employee of Alexion Pharmaceuticals at the time of the study conduct, and he owns AstraZeneca stocks. Karin Dahan received grants from Alnylam (through her institution), consulting fees and honoraria for lectures from Alnylam and Sobi, support for attending meetings from Chiesi, and participated on a Data Safety Monitoring Board or Advisory Board for Alnylam. Patrick Stordeur received honoraria for lectures from Alexion Pharma Belgium and support for attending meetings from Thermofisher. Johan Vande Walle received consulting fees from Ferring, Astellas, Bayer, and Alexion (through his institution); payment for lectures from Ferring, Bayer, and Alexion (through his institution); payment for expert testimony from Ferring (through his institution); support for attending meetings from Alexion (through his institution). He participated on a Data Safety Monitoring Board or Advisory Board for Bayer (through his institution) and has a leadership or fiduciary role in other board, society, committee or advocacy group for the International Pediatric Nephrology Association and Connect 4 Children (through his institution). Tess Van Meerhaeghe, Eric Goffin, Brigitte Adams and Stefan Van Cauwelaert have nothing to disclose.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflict of interest"}},{"value":"The study was approved by the relevant ethics committee at every center.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical approval"}},{"value":"The study was conducted in accordance with the Declaration of Helsinki. The protocol was reviewed and approved by the relevant ethics committee at every center, and all participants or their legal representatives provided written informed consent for enrollment. No animals were involved in this research.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Human and animal rights"}},{"value":"All participants or their legal representatives provided written informed consent for enrollment.","order":5,"name":"Ethics","group":{"name":"EthicsHeading","label":"Informed consent and consent to participate"}}]}}