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Impact of COVID-19 related healthcare crisis on treatments for patients with lysosomal storage disorders, the first Italian experience.
Sechi, Annalisa; Macor, Daniela; Valent, Serena; Da Riol, Rosalia Maria; Zanatta, Manuela; Spinelli, Alessandro; Bianchi, Katja; Bertossi, Nadia; Dardis, Andrea; Valent, Francesca; Scarpa, Maurizio.
  • Sechi A; Regional Coordinating Center for Rare Diseases, University Hospital of Udine, Udine, Italy. Electronic address: annalisa.sechi@asufc.sanita.fvg.it.
  • 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.
Mol Genet Metab ; 130(3): 170-171, 2020 07.
Article in English | MEDLINE | ID: covidwho-141491
ABSTRACT
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%).
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Full text: Available Collection: International databases Database: MEDLINE Main subject: Pneumonia, Viral / Lysosomal Storage Diseases / Coronavirus Infections Type of study: Experimental Studies / Observational study / Qualitative research / Randomized controlled trials Topics: Long Covid Limits: Adult / Female / Humans / Male / Middle aged / Young adult Country/Region as subject: Europa Language: English Journal: Mol Genet Metab Journal subject: Molecular Biology / Biochemistry / Metabolism Year: 2020 Document Type: Article

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Full text: Available Collection: International databases Database: MEDLINE Main subject: Pneumonia, Viral / Lysosomal Storage Diseases / Coronavirus Infections Type of study: Experimental Studies / Observational study / Qualitative research / Randomized controlled trials Topics: Long Covid Limits: Adult / Female / Humans / Male / Middle aged / Young adult Country/Region as subject: Europa Language: English Journal: Mol Genet Metab Journal subject: Molecular Biology / Biochemistry / Metabolism Year: 2020 Document Type: Article