Managing PNH

Managing PNH
Background image
People with PNH will need regular monitoring to check the progress of their disease and their response to treatment.1,2

Learning about PNH and how it affects your body is an important step towards managing the condition. It will also help you better understand your treatment. Learning how to keep track of your laboratory test results will help you to understand more about how PNH affects your body. 
Flask icon
Some useful websites are PNH Global Alliance, EURORDIS, AAMDSIF and European Network for Rare and Congenital Anaemias (ENERCA).
EURORDIS, European Organisation for Rare Diseases; AAMDSIF, Aplastic Anemia and MDS International Foundation                                                                                          
 Kulasekararaj AG, Kuter DJ, Griffin M, et al. Biomarkers and laboratory assessments for monitoring the treatment of patients with paroxysmal nocturnal hemoglobinuria: Differences between terminal and proximal complement inhibition. Blood Rev 2023;59:101041. Lima M. Laboratory studies for paroxysmal nocturnal hemoglobinuria, with emphasis on high sensitivity flow cytometry. Pract Lab Med 2020;20:e00158. Szlendak U, Budziszewska B, Spychalska J, et al. Paroxysmal nocturnal hemoglobinuria: advances in the understanding of pathophysiology, diagnosis, and treatment. Pol Arch Intern Med 2022;132:16271. Sutherland D R, et al. ICCS/ESCCA Consensus Guidelines to detect GPI-deficient cells in Paroxysmal Nocturnal Hemoglobinuria (PNH ) and related Disorders Part 2 – Reagent Selection and Assay Optimization for High-Sensitivity Testing. International Clinical Cytometry Society 2017. Risitano AM, Paroxysmal nocturnal hemoglobinuria: pathophysiology, natural history and treatment options in the era of biological agents. Biologics 2008. Hill A. Paroxysmal nocturnal hemoglobinuria. Nature Reviews Disease Primers. 2017. Brodsky, R. A. Paroxysmal Nocturnal Hemoglobinuria. In Hematology: Basic Principles and Practice (pp. 415–424). 2018.