Outcomes from the International Society of Nephrology Hemolytic Uremic Syndromes International Forum
David Kavanagh, Gianluigi Ardissino, Vicky Brocklebank, Romy N. Bouwmeester, Arvind Bagga, Rob ter Heine, Sally Johnson, Christoph Licht, Alison Lap‐tak, Marina Noris, Manuel Praga, Éric Rondeau, Aditi Sinha, Richard J. Smith, Neil Sheerin, H. Trimarchi, Jack F.M. Wetzels, Marina Vivarelli, Nicole C. A. J. van de Kar, Larry A. Greenbaum, Adrian Lungu, Aleksandra Żurowska, Alexandra Gerogianni, Anne M. Durkan, Anne M. Schijvens, Anne-Laure Lapeyraque, Anuja Java, Atif Awan, Bianca Covella, Bradley P. Dixon, Carine El Sissy, Caroline Duinevel, Christine Maville, Daniel Turudić, Diana Karpman, Dieter Haffner, Elżbieta Trembecka-Dubel, Fatih Özaltın, Francesco Emma, Franz Schaefer, Hee Gyung Kang, Hernán Trimarchi, Hernando Trujillo, Ifeoma Ulasi, Alex Ekwueme, Jan Menne, Jeffrey Laurence, Joaquim Calado, Johannes Hofer, Julien Zuber, Jun Oh, Karmila Abu Bakar, Kate Smith Jackson, Daniel Turudić, Danko Milošević, Diana Karpman, Elżbieta Trembecka-Dubel, Fatih Özaltın, Francesco Emma, Franz Schaefer, Gema Ariceta, Hee Gyung Kang, Hernán Trimarchi, Hernando Trujillo, Ifeoma Ulasi, Alex Ekwueme, Jan Menne, Jeffrey Laurence, Joaquim Calado, Kathleen Claes, Kati Kaartinen, Khalid Alhasan, Kioa L. Wijnsma, Lambertus P. van den Heuvel, Laura Alconcher, Maria Izabel de Holanda, Maria Szczepańska, Marie-Sophie Meuleman, Mathieu Lemaire, Meredith Harris, Michael G. Michalopulos, Michal Malina, Mihály Józsi, Nataša Stajić, Nicole M. Isbel, Patrick R. Walsh, Paula Coccia, Raja Ramachandran, Rezan Topaloğlu, Sjoerd A.M.E.G. Timmermans, Sophie Chauvet, Tanja Kersnik Levart, Tomáš Seeman, Velibor Tasić, Vladimı́r Tesař, Wen‐Chao Song, Yuzhou Zhang, Zoltán Prohászka
Abstract
Hemolytic uremic syndromes (HUSs) are a heterogeneous group of conditions, only some of which are mediated by complement (complement-mediated HUS). We report the outcome of the 2023 International Society of Nephrology HUS International Forum where a global panel of experts considered the current state of the art, identified areas of uncertainty, and proposed optimal solutions. Areas of uncertainty and areas for future research included the nomenclature of HUS, novel complement testing strategies, identification of biomarkers, genetic predisposition to atypical HUS, optimal dosing and withdrawal strategies for C5 inhibitors, treatment of kidney transplant recipients, disparity of access to treatment, and the next generation of complement inhibitors in complement-mediated HUS. The current rationale for optimal patient management is described.