Frailties and critical issues in neuromuscular diseases highlighted by SARS-CoV-2 pandemic: how many patients are still "invisible"?


Journal

Acta myologica : myopathies and cardiomyopathies : official journal of the Mediterranean Society of Myology
ISSN: 2532-1900
Titre abrégé: Acta Myol
Pays: Italy
ID NLM: 9811169

Informations de publication

Date de publication:
Mar 2022
Historique:
received: 23 02 2022
accepted: 08 03 2022
entrez: 25 4 2022
pubmed: 26 4 2022
medline: 27 4 2022
Statut: epublish

Résumé

Almost 90% of neuromuscular diseases (NMDs) are classified as rare diseases, defined as conditions affecting less than 5 individuals in 10.000 (0.05%). Their rarity and diversity pose specific challenges for healthcare and research. Epidemiological data on NMDs are often lacking and incomplete. The COVID-19 pandemic has further highlighted the management difficulties of NMDs patients and the necessity to continue the program of implementation of standard of care. This article summarizes the Italian experience during pandemic.

Identifiants

pubmed: 35465339
doi: 10.36185/2532-1900-065
pmc: PMC9004333
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

24-29

Informations de copyright

©2022 Gaetano Conte Academy - Mediterranean Society of Myology.

Déclaration de conflit d'intérêts

Conflict of interest statement The Authors declare no conflict of interest.

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Auteurs

Giulia Ricci (G)

Department of Clinical and Experimental Medicine, University of Pisa, Pisa, Italy.

Francesca Torri (F)

Department of Clinical and Experimental Medicine, University of Pisa, Pisa, Italy.

Francesca Bianchi (F)

Department of Clinical and Experimental Medicine, University of Pisa, Pisa, Italy.

Lorenzo Fontanelli (L)

Department of Clinical and Experimental Medicine, University of Pisa, Pisa, Italy.

Erika Schirinzi (E)

Department of Clinical and Experimental Medicine, University of Pisa, Pisa, Italy.

Elisa Gualdani (E)

Agenzia Regionale Toscana, ARS.

Paolo Francesconi (P)

Agenzia Regionale Toscana, ARS.

Delia Gagliardi (D)

Foundation IRCCS Ca' Granda Ospedale Maggiore Policlinico, Neurology Unit, Milan, Italy.

Gigliola Serra (G)

Clinica di Neuropsichiatria Infantile, Dipartimento di Scienze Mediche, Chirurgiche e Sperimentali, Università degli Studi di Sassari, Sassari, Italy.

Tiziana Mongini (T)

Department of Neurosciences Rita Levi Montalcini, Università degli Studi di Torino, Torino, Italy.

Gabriele Siciliano (G)

Department of Clinical and Experimental Medicine, University of Pisa, Pisa, Italy.

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Classifications MeSH