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Impact of the COVID-19 pandemic on the standard of care for patients with lysosomal storage diseases : a survey of healthcare professionals in the Fabry, Gaucher, and Hunter Outcome Survey registries

dc.contributor.authorElstein, Deborahpt_BR
dc.contributor.authorGiugliani, Robertopt_BR
dc.contributor.authorMuenzer, Josephpt_BR
dc.contributor.authorSchenk, Jörn Magnuspt_BR
dc.contributor.authorSchwartz, Ida Vanessa Doederleinpt_BR
dc.contributor.authorAnagnostopoulou, Christinapt_BR
dc.date.accessioned2022-01-27T04:34:31Zpt_BR
dc.date.issued2021pt_BR
dc.identifier.issn2214-4269pt_BR
dc.identifier.urihttp://hdl.handle.net/10183/234547pt_BR
dc.description.abstractthe needs of their healthcare providers were explored using a 12-question survey. Overall, 80/91 respondents (88%) indicated that the pandemic had negatively affected standards of care. With increased reliance on tele-medicine, the respondents highlighted the need for a personalized approach to care, direct and frequent communication with patients, and greater involvement of patients and caregivers.en
dc.format.mimetypeapplication/pdfpt_BR
dc.language.isoengpt_BR
dc.relation.ispartofMolecular genetics and metabolism reports. New York. Vol. 28 (2021), 100788, 4 p.pt_BR
dc.rightsOpen Accessen
dc.subjectCOVID-19pt_BR
dc.subjectLysosomal storage diseaseen
dc.subjectDoença de Fabrypt_BR
dc.subjectFabry Outcome Surveyen
dc.subjectGaucher Outcome Surveyen
dc.subjectDoenças por armazenamento dos lisossomospt_BR
dc.subjectDoença de Gaucherpt_BR
dc.subjectHunter Outcome Surveyen
dc.subjectCOVID-19en
dc.subjectMucopolissacaridose IIpt_BR
dc.subjectStandard of careen
dc.titleImpact of the COVID-19 pandemic on the standard of care for patients with lysosomal storage diseases : a survey of healthcare professionals in the Fabry, Gaucher, and Hunter Outcome Survey registriespt_BR
dc.typeArtigo de periódicopt_BR
dc.identifier.nrb001135974pt_BR
dc.type.originEstrangeiropt_BR


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