Impact of COVID-19 related healthcare crisis on treatments for patients with lysosomal storage disorders, the first Italian experience.

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Tytuł:: Impact of COVID-19 related healthcare crisis on treatments for patients with lysosomal storage disorders, the first Italian experience.
Autorzy:: Sechi A; Regional Coordinating Center for Rare Diseases, University Hospital of Udine, Udine, Italy. Electronic address: .
Macor D; Regional Coordinating Center for Rare Diseases, University Hospital of Udine, Udine, Italy.
Valent S; Regional Coordinating Center for Rare Diseases, University Hospital of Udine, Udine, Italy.
Da Riol RM; Regional Coordinating Center for Rare Diseases, University Hospital of Udine, Udine, Italy.
Zanatta M; Regional Coordinating Center for Rare Diseases, University Hospital of Udine, Udine, Italy.
Spinelli A; Regional Coordinating Center for Rare Diseases, University Hospital of Udine, Udine, Italy.
Bianchi K; Regional Coordinating Center for Rare Diseases, University Hospital of Udine, Udine, Italy.
Bertossi N; Regional Coordinating Center for Rare Diseases, University Hospital of Udine, Udine, Italy.
Dardis A; Regional Coordinating Center for Rare Diseases, University Hospital of Udine, Udine, Italy.
Valent F; Institute of Hygiene and Clinical Epidemiology, University Hospital of Udine, Udine, Italy.
Scarpa M; Regional Coordinating Center for Rare Diseases, University Hospital of Udine, Udine, Italy.
Źródło:: Molecular genetics and metabolism [Mol Genet Metab] 2020 Jul; Vol. 130 (3), pp. 170-171. Date of Electronic Publication: 2020 Apr 29.
Typ publikacji:: Journal Article
Język:: English
Imprint Name(s):: Original Publication: Orlando, FL : Academic Press, c1998-
MeSH Terms:: Coronavirus Infections/*epidemiology
Lysosomal Storage Diseases/*therapy
Pneumonia, Viral/*epidemiology
Adult ; COVID-19 ; Coronavirus Infections/complications ; Coronavirus Infections/psychology ; Coronavirus Infections/therapy ; Enzyme Replacement Therapy ; Fear ; Female ; Humans ; Italy/epidemiology ; Lysosomal Storage Diseases/complications ; Male ; Middle Aged ; Pandemics ; Patient Acceptance of Health Care ; Patient Care Management ; Pneumonia, Viral/complications ; Pneumonia, Viral/psychology ; Pneumonia, Viral/therapy ; Surveys and Questionnaires ; Young Adult
References:: Adv Drug Deliv Rev. 2017 Sep 1;118:109-134. (PMID: 28502768)
Nat Rev Drug Discov. 2018 Feb;17(2):133-150. (PMID: 29147032)
Pediatr Clin North Am. 2018 Apr;65(2):353-373. (PMID: 29502918)
Eur J Clin Microbiol Infect Dis. 2020 Jun;39(6):1011-1019. (PMID: 32291542)
Contributed Indexing:: Keywords: COVID-19; Enzyme replacement therapy; Lysosomal storage disorders
Entry Date(s):: Date Created: 20200511 Date Completed: 20200622 Latest Revision: 20210110
Update Code:: 20240105
PubMed Central ID:: PMC7189198
DOI:: 10.1016/j.ymgme.2020.04.002
PMID:: 32386848
: Czasopismo naukowe

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The direct and indirect effects of Coronavirus Disease-19 (COVID-19) pandemic, on Italian patients with lysosomal storage disorders receiving therapy, were analyzed by a phone questionnaire. No proved COVID-19 emerged among 102 interviewed. No problems were reported by patients receiving oral treatments. Forty-nine% of patients receiving enzyme replacement therapy in hospitals experienced disruptions, versus 6% of those home-treated. The main reasons of missed infusions were fear of infection (62.9%) and re-organization of the infusion centers (37%).
(Copyright © 2020 Elsevier Inc. All rights reserved.)

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