Literature DB >> 35465339

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

Giulia Ricci1, Francesca Torri1, Francesca Bianchi1, Lorenzo Fontanelli1, Erika Schirinzi1, Elisa Gualdani2, Paolo Francesconi2, Delia Gagliardi3, Gigliola Serra4, Tiziana Mongini5, Gabriele Siciliano1.   

Abstract

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. ©2022 Gaetano Conte Academy - Mediterranean Society of Myology.

Entities:  

Keywords:  COVID-19 pandemic; neuromuscular diseases

Mesh:

Year:  2022        PMID: 35465339      PMCID: PMC9004333          DOI: 10.36185/2532-1900-065

Source DB:  PubMed          Journal:  Acta Myol        ISSN: 1128-2460


  14 in total

Review 1.  Facioscapulohumeral Muscular Dystrophy.

Authors:  Alec M DeSimone; Anna Pakula; Angela Lek; Charles P Emerson
Journal:  Compr Physiol       Date:  2017-09-12       Impact factor: 9.090

Review 2.  The Epidemiology of Neuromuscular Diseases.

Authors:  Jaydeep M Bhatt
Journal:  Neurol Clin       Date:  2016-11       Impact factor: 3.806

Review 3.  COVID-19 and neuromuscular disorders.

Authors:  Amanda C Guidon; Anthony A Amato
Journal:  Neurology       Date:  2020-04-13       Impact factor: 9.910

Review 4.  Myotonic Muscular Dystrophies.

Authors:  Nicholas E Johnson
Journal:  Continuum (Minneap Minn)       Date:  2019-12

Review 5.  The burden, epidemiology, costs and treatment for Duchenne muscular dystrophy: an evidence review.

Authors:  S Ryder; R M Leadley; N Armstrong; M Westwood; S de Kock; T Butt; M Jain; J Kleijnen
Journal:  Orphanet J Rare Dis       Date:  2017-04-26       Impact factor: 4.123

6.  Estimating the impact of COVID-19 pandemic on services provided by Italian Neuromuscular Centers: an Italian Association of Myology survey of the acute phase.

Authors:  Eleonora Mauri; Elena Abati; Olimpia Musumeci; Carmelo Rodolico; Maria Grazia D'Angelo; Massimiliano Mirabella; Matteo Lucchini; Luca Bello; Elena Pegoraro; Lorenzo Maggi; Letizia Manneschi; Chiara Gemelli; Marina Grandis; Angela Zuppa; Sara Massucco; Luana Benedetti; Claudia Caponnetto; Angelo Schenone; Alessandro Prelle; Stefano C Previtali; Marina Scarlato; Adele D'Amico; Enrico Bertini; Elena M Pennisi; Laura De Giglio; Marika Pane; Eugenio Mercuri; Tiziana Mongini; Federica Ricci; Angela Berardinelli; Guja Astrea; Sara Lenzi; Roberta Battini; Giulia Ricci; Francesca Torri; Gabriele Siciliano; Filippo M Santorelli; Alessandra Ariatti; Massimiliano Filosto; Luigia Passamano; Luisa Politano; Marianna Scutifero; Paola Tonin; Barbara Fossati; Chiara Panicucci; Claudio Bruno; Sabrina Ravaglia; Mauro Monforte; Giorgio Tasca; Enzo Ricci; Antonio Petrucci; Lucio Santoro; Lucia Ruggiero; Andrea Barp; Emilio Albamonte; Valeria Sansone; Delia Gagliardi; Gianluca Costamagna; Alessandra Govoni; Francesca Magri; Roberta Brusa; Daniele Velardo; Megi Meneri; Monica Sciacco; Stefania Corti; Nereo Bresolin; Isabella Moroni; Sonia Messina; Antonio Di Muzio; Vincenzo Nigro; Rocco Liguori; Giovanni Antonini; Antonio Toscano; Carlo Minetti; Giacomo Pietro Comi
Journal:  Acta Myol       Date:  2020-06-01

7.  Survey on patients' organisations' knowledge and position paper on screening for inherited neuromuscular diseases in Europe.

Authors:  F Lamy; A Ferlini; Teresinha Evangelista
Journal:  Orphanet J Rare Dis       Date:  2021-02-10       Impact factor: 4.123

Review 8.  Prevalence, incidence and carrier frequency of 5q-linked spinal muscular atrophy - a literature review.

Authors:  Ingrid E C Verhaart; Agata Robertson; Ian J Wilson; Annemieke Aartsma-Rus; Shona Cameron; Cynthia C Jones; Suzanne F Cook; Hanns Lochmüller
Journal:  Orphanet J Rare Dis       Date:  2017-07-04       Impact factor: 4.123

9.  E-Health & Innovation to Overcome Barriers in Neuromuscular Diseases. Report from the 1st eNMD Congress: Nice, France, March 22-23, 2019.

Authors:  Jonathan Pini; Gabriele Siciliano; Pauline Lahaut; Serge Braun; Sandrine Segovia-Kueny; Anna Kole; Ines Hérnando; Julij Selb; Erika Schirinzi; Tina Duong; Jean-Yves Hogrel; José Javier Serrano Olmedo; John Vissing; Laurent Servais; Dominique Vincent-Genod; Carole Vuillerot; Sylvie Bannwarth; Damien Eggenspieler; Savine Vicart; Jordi Diaz-Manera; Hanns Lochmüller; Sabrina Sacconi
Journal:  J Neuromuscul Dis       Date:  2021

Review 10.  How to manage with telemedicine people with neuromuscular diseases?

Authors:  Fiore Manganelli; Luigi Lavorgna; Emanuele Spina; Francesca Trojsi; Stefano Tozza; Aniello Iovino; Rosa Iodice; Carla Passaniti; Gianmarco Abbadessa; Simona Bonavita; Letizia Leocani; Gioacchino Tedeschi
Journal:  Neurol Sci       Date:  2021-06-25       Impact factor: 3.307

View more

北京卡尤迪生物科技股份有限公司 © 2022-2023.