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1. Motor and respiratory decline in patients with late onset Pompe disease after cessation of enzyme replacement therapy during COVID-19 pandemic

Author

Céline, Tard, Emmanuelle, Salort-Campana, Maud, Michaud, Marco, Spinazzi, Aleksandra, Nadaj Pakleza, Hélène, Durr, Françoise, Bouhour, Claire, Lefeuvre, Romain, Thomas, Azzeddine, Arrassi, Nadjib, Taouagh, Guilhem, Solé, and Tardieu, M

Subjects
Treatment Outcome, Neurology, Glycogen Storage Disease Type II, SARS-CoV-2, COVID-19, Humans, Enzyme Replacement Therapy, alpha-Glucosidases, Neurology (clinical), Pandemics
Abstract

Data on interruption of enzyme replacement therapy (ERT) are scarce in late onset Pompe disease. Due to the COVID-19 crisis, eight neuromuscular reference centers in France were obligated to stop the treatment for 31 patients.We collected the motor and respiratory data from our French registry, before COVID-19 and at treatment restart.In 2.2 months (mean), patients showed a significant deterioration of 37 m (mean) in the 6-min walk test and a loss of 210 ml (mean) of forced vital capacity, without ad integrum restoration after 3 months of ERT restart.This national study based on data from the French Pompe Registry shows that the interruption of ERT, even as short as a few months, worsens Pompe patients' motor and respiratory function.

Published
2021

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