BACKGROUND: Telemedicine (TM) contributes to bridge the gap between healthcare facilities and patients' homes with neuromuscular disease (NMD) because of mobility issues. However, its deployment is limited due to difficulties evaluating subtle neurological signs such as mild weakness or sensory deficits. The COVID-19 pandemic has disrupted healthcare delivery worldwide, necessitating rapid measures implementation by health care providers (HCPs) to protect patients from acquiring SARS-CoV-2 while maintaining the best care and treatment. OBJECTIVES: Given the challenges faced by remote healthcare assistance of NMD patients, we aim to evaluate the use of TM in NMD during the COVID-19 pandemic. METHODS: Based on the Model for Assessment-of-Telemedicine-Applications (MAST), we conducted a survey amongst clinicians of the ERN EURO NMD (European-Reference-Network-for-Rare-Neuromuscular-Diseases). RESULTS: Based on 42 responses over 76 expected ones, our results show that the COVID-19 pandemic significantly increased the number of HCPs using TM (from 60% to 100%). The TM types most used during the COVID-19 period are teleconsultation and consultation by phone, particularly in the context of symptoms worsening in NMD patients with COVID-19 infection. Most European HCPs were satisfied when using TM but as a complementary option to physical consultations. Many responses addressed the issue of technical aspects needing improvement, particularly for elderly patients who need caregivers' assistance for accessing the TM platform. CONCLUSIONS: TM has been essential during COVID-19, but its use still presents some limitations for NMD patients with cognitive deficits or for first-time diagnosis. Thus, TM should be used as complement to, rather than substitute, for face-to-face consultations.

1st Division of Neurology Department of Advanced Medical and Surgical Sciences Università degli Studidella Campania Luigi Vanvitelli Scuola di Medicina e Chirurgia Napoli Campania Italy

Amsterdam University Medical Centres Academic Medical Centre Amsterdam The Netherlands

ASST 'Spedali Civili' Clinical Center NEMO Brescia for neuromuscular diseases and University of Brescia Brescia Italy

Centre de Référence des Maladies Neuromusculaires et de la SLA APHM CHU Timone Marseille France

Centre de Référence Maladies Neuromusculaires Atlantique Occitanie Caraïbes Hôpital Hôtel Dieu Nantes France

Centro di Riferimento Regionale perla Ricerca Neurology and Neuromuscular Diseases Unit Italy

Clinic for Pediatrics 1 Pediatric Neurology University Hospital Essen Essen Germany

Department of Clinical and Experimental Medicine Reference Centre for Rare Neuromuscular Disorders University of Messina Messina Italy

Department of Clinical and Experimental Medicine University of Pisa Pisa Italy

Department of Neurology and Laboratory of Neuroscience Istituto Auxologico Italiano IRCCS Milan Italy

Department of Neurology Centre de Référence Neuromusculaire Hôpital Erasme Université Libre de Bruxelles Brussels Belgium

Department of Neurology Clinic of Nervous Diseases University Hospital Aleksandrovska Medical University Sofia Bulgaria

Department of Neurology Erasmus MC University Medical Center Rotterdam The Netherlands

Department of Neurology Klinikum München Friedrich Baur Institut München Germany

Department of Neurology Leiden University Medical Centre Leiden The Netherlands

Department of Neurology Maastricht University Medical Center Maastricht The Netherlands

Department of Neurology Neuromuscular Diseases Unit Hospital Universitari i Politècnic La Fe Valencia Spain

Department of Neurology Neuromuscular Reference Centre University Hospital Saint Luc Brussels Belgium

Department of Neurology Radboud University Medical Centre GA Nijmegen The Netherlands

Department of Neurology University Hospital Brno Brno Czech Republic

Department of Neurology University Hospitals Leuven and Laboratory for Muscle Diseases and Neuropathies Department of Neurosciences KU Leuven Leuven Belgium

Department of Neurology University of Pécs Pécs Hungary

Department of Neurosciences Rita Levi Montalcini Neuromuscular Center University of Torino Turin Italy

Department of Pediatric Neurology Charité Universitätsmedizin Berlin Berlin Germany

Department of Pediatric Neurology Motol University Hospital Prague Czech Republic

Department of Public Health and Pediatric Sciences Section of Child and Adolescent Neuropsychiatry University of Turin Turin Italy

European Patient Organisation for Dysimmune and Inflammatory Neuropathies and EURO NMD Educational board Paris France

Fondazione Policlinico Universitario Agostino Gemelli IRCCS Rome Italy

Institut de Myologie Centre de Référence de Pathologie Neuromusculaire Paris Est AP HP Pitié Salpêtrière University Hospital Sorbonne University Paris France

Institute of Clinical Neurophysiology University Medical Centre Ljubljana Ljubljana Slovenia

Institute of Genomic Medicine and Rare Disorders Semmelweis University Budapest Hungary

Muscle Research Unit Experimental and Clinical Research Center Charit Germany

Netherlands Institute for Health Services Research Utrecht The Netherlands

Neuroimmunology and Neuromuscular Disease Unit Foundation IRCCS Carlo Besta Neurological Institute Milan Italy

Neurology Department Bucharest University and Emergency Hospital Bucharest Romania

Neurology Department CHU Henri Mondor APHP UPEC Créteil France

Neuromuscular Center Azienda Ospedaliera Universitaria Città della Salute e della Scienza di Torino University of Turin Turin Italy

Neuromuscular Diseases Unit Department of Neurology Hospital de la Santa Creu i Sant Pau Institut d'Investigació Biomèdica Sant Pau Barcelona Spain

Neuromuscular Omnicentre Fondazione Serena Onlus Milan Italy

Neuromuscular Unit Neurology Department Hospital de Sant Pau IIB Sant Pau Barcelona Spain

Neuromuscular Unit Neuropaediatrics Department Institut de Recerca Hospital Universitari Sant Joan de Déu ISCIII CIBERER Barcelona Spain

Peripheral Nervous System and Muscle Department Rare Neuromuscular Disease Reference Center University Hospital Center of Nice Nice France

Unit of Neurology San Luca Hospital Via Lippi Francesconi Lucca Italy

Unit of Rare Neurodegenerative and Neurometabolic Diseases Department of Clinical Neurosciences Fondazione IRCCS Istituto Neurologico Carlo Besta Milan Italy

Unità Operativa Complessa di Neurologia Fondazione Policlinico Universitario A Gemelli IRCCS Largo A Gemelli Rome Italy

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$a Telemedicine in Neuromuscular Diseases During Covid-19 Pandemic: ERN-NMD European Survey / $c L. El-Hassar, A. Amara, B. Sanson, O. Lacatus, A. Amir Belhouchet, M. Kroneman, K. Claeys, JP. Plançon, C. Rodolico, G. Primiano, F. Trojsi, M. Filosto, TE. Mongini, S. Bortolani, M. Monforte, E. Carraro, L. Maggi, F. Ricci, V. Silani, D. Orsucci, A. Créange, Y. Péréon, T. Stojkovic, NAME. van der Beek, A. Toscano, D. Pareyson, S. Attarian, PYK. Van den Bergh, G. Remiche, JGJ. Hoeijmakers, U. Badrising, NC. Voermans, AM. Kaindl, U. Schara-Schmidt, B. Schoser, E. Gazzerro, J. Haberlová, S. Voháňka, E. Pál, MJ. Molnar, L. Leonardis, IL. Tournev, AN. Osorio, M. Olivé, N. Muelas, J. Alonso-Perez, F. Plá, M. de Visser, G. Siciliano, S. Sacconi

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$a BACKGROUND: Telemedicine (TM) contributes to bridge the gap between healthcare facilities and patients' homes with neuromuscular disease (NMD) because of mobility issues. However, its deployment is limited due to difficulties evaluating subtle neurological signs such as mild weakness or sensory deficits. The COVID-19 pandemic has disrupted healthcare delivery worldwide, necessitating rapid measures implementation by health care providers (HCPs) to protect patients from acquiring SARS-CoV-2 while maintaining the best care and treatment. OBJECTIVES: Given the challenges faced by remote healthcare assistance of NMD patients, we aim to evaluate the use of TM in NMD during the COVID-19 pandemic. METHODS: Based on the Model for Assessment-of-Telemedicine-Applications (MAST), we conducted a survey amongst clinicians of the ERN EURO NMD (European-Reference-Network-for-Rare-Neuromuscular-Diseases). RESULTS: Based on 42 responses over 76 expected ones, our results show that the COVID-19 pandemic significantly increased the number of HCPs using TM (from 60% to 100%). The TM types most used during the COVID-19 period are teleconsultation and consultation by phone, particularly in the context of symptoms worsening in NMD patients with COVID-19 infection. Most European HCPs were satisfied when using TM but as a complementary option to physical consultations. Many responses addressed the issue of technical aspects needing improvement, particularly for elderly patients who need caregivers' assistance for accessing the TM platform. CONCLUSIONS: TM has been essential during COVID-19, but its use still presents some limitations for NMD patients with cognitive deficits or for first-time diagnosis. Thus, TM should be used as complement to, rather than substitute, for face-to-face consultations.

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$a Amara, Ahmed $u Peripheral Nervous System and Muscle Department, Rare Neuromuscular Disease Reference Center, University Hospital Center of Nice, Nice, France

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$a Sanson, Benoit $u Peripheral Nervous System and Muscle Department, Rare Neuromuscular Disease Reference Center, University Hospital Center of Nice, Nice, France

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$a Lacatus, Oana $u Peripheral Nervous System and Muscle Department, Rare Neuromuscular Disease Reference Center, University Hospital Center of Nice, Nice, France $u Neurology Department, Bucharest University and Emergency Hospital, Bucharest, Romania

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$a Maggi, Lorenzo $u Neuroimmunology and Neuromuscular Disease Unit, Foundation IRCCS Carlo Besta, Neurological Institute, Milan, Italy

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$a Ricci, Federica $u Department of Public Health and Pediatric Sciences, Section of Child and Adolescent Neuropsychiatry, University of Turin, Turin, Italy

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$a Silani, Vincenzo $u Department of Neurology and Laboratory of Neuroscience, Istituto Auxologico Italiano, IRCCS, Milan, Italy

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$a van der Beek, Nadine Anna Maria Elisabeth $u Department of Neurology, Erasmus MC University Medical Center, Rotterdam, The Netherlands

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$a Toscano, Antonio $u Department of Clinical and Experimental Medicine, Reference Centre for Rare Neuromuscular Disorders, University of Messina, Messina, Italy

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$a Pareyson, Davide $u Unit of Rare Neurodegenerative and Neurometabolic Diseases, Department of Clinical Neurosciences, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy

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$a Attarian, Shahram $u Centre de Référence des Maladies Neuromusculaires et de la SLA, APHM, CHU Timone, Marseille, France

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$a Van den Bergh, Peter Y K $u Department of Neurology, Neuromuscular Reference Centre, University Hospital Saint-Luc, Brussels, Belgium

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$a Kaindl, Angela M $u Department of Pediatric Neurology, Charité-Universitätsmedizin Berlin, Berlin, Germany

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$a Schara-Schmidt, Ulrike $u Clinic for Pediatrics I, Pediatric Neurology, University Hospital Essen, Essen, Germany

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$a Schoser, Benedikt $u Department of Neurology Klinikum München, Friedrich-Baur-Institut, München, Germany

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$a Gazzerro, Elisabetta $u Muscle Research Unit, Experimental and Clinical Research Center, Charit, Germany

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$a de Visser, Marianne $u Amsterdam University Medical Centres, Academic Medical Centre, Amsterdam, The Netherlands

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$a Siciliano, Gabriele $u Department of Clinical and Experimental Medicine, University of Pisa, Pisa, Italy

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