Functional Assessment of Fatigue and Other Patient-Reported Outcomes in Patients Enrolled in the Global aHUS Registry

• Type of Material: Article
• Authors: Larry Greenbaum, Emory University; Christoph Licht, Hospital for Sick Children; Vasileios Nikolaou, PAREXEL International; Imad Al-Dakkak, Alexion Pharmaceuticals; Janet Green, Patient; Christian Stefan Haas, Philipps University; Elena Roman-Ortiz, Hospital Universitario Doctor Peset; Hae Il Cheong, Seoul National University Children’s Hospital; Lisa Sartz, Skåne University Hospital; Rita Swinford, University of Texas Houston; Ioannis Tomazos, Alexion Pharmaceuticals; Benjamin Miller, Alexion Pharmaceuticals; Spero Cataland, Ohio State University
• Language: English
• Date: 2020-08-01
• Publisher: Elsevier
• Publication Version: Final Published Version
• Copyright Statement: © 2020 International Society of Nephrology. Published by Elsevier Inc.
• License: Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International
• Final Published Version (URL): http://dx.doi.org/10.1016/j.ekir.2020.05.003
• Title of Journal or Parent Work: Kidney International Reports
• Volume: 5
• Issue: 8
• Start Page: 1161
• End Page: 1171
• Grant/Funding Information: This analysis was supported by Alexion Pharmaceuticals, Inc., Boston, MA, USA. Alexion Pharmaceuticals, Inc., was responsible for the collection, management, and analysis of information contained in the Global aHUS Registry. Alexion Pharmaceuticals, Inc., contributed to data interpretation, preparation, review, and approval of the manuscript; and the decision to submit the manuscript for publication.; These services complied with international guidelines for Good Publication Practice and were funded by Alexion Pharmaceuticals, Inc.
• Keywords: complement; atypical hemolytic uremic syndrome; patient-reported outcomes; aHUS; FACIT-Fatigue; fatigue
• Research Categories: Chemistry, Pharmaceutical; Health Sciences, Medicine and Surgery; Health Sciences, Health Care Management

Abstract

Atypical hemolytic uremic syndrome (aHUS) is a progressive and potentially life-threatening disease characterized by complement-mediated thrombotic microangiopathy. Patients with aHUS may experience fatigue, which can negatively impact their lives, but there is a knowledge gap regarding disease burden in these patients.