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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.author | Elstein, Deborah | pt_BR |
dc.contributor.author | Giugliani, Roberto | pt_BR |
dc.contributor.author | Muenzer, Joseph | pt_BR |
dc.contributor.author | Schenk, Jörn Magnus | pt_BR |
dc.contributor.author | Schwartz, Ida Vanessa Doederlein | pt_BR |
dc.contributor.author | Anagnostopoulou, Christina | pt_BR |
dc.date.accessioned | 2022-01-27T04:34:31Z | pt_BR |
dc.date.issued | 2021 | pt_BR |
dc.identifier.issn | 2214-4269 | pt_BR |
dc.identifier.uri | http://hdl.handle.net/10183/234547 | pt_BR |
dc.description.abstract | the 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.mimetype | application/pdf | pt_BR |
dc.language.iso | eng | pt_BR |
dc.relation.ispartof | Molecular genetics and metabolism reports. New York. Vol. 28 (2021), 100788, 4 p. | pt_BR |
dc.rights | Open Access | en |
dc.subject | COVID-19 | pt_BR |
dc.subject | Lysosomal storage disease | en |
dc.subject | Doença de Fabry | pt_BR |
dc.subject | Fabry Outcome Survey | en |
dc.subject | Gaucher Outcome Survey | en |
dc.subject | Doenças por armazenamento dos lisossomos | pt_BR |
dc.subject | Doença de Gaucher | pt_BR |
dc.subject | Hunter Outcome Survey | en |
dc.subject | COVID-19 | en |
dc.subject | Mucopolissacaridose II | pt_BR |
dc.subject | Standard of care | en |
dc.title | 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 | pt_BR |
dc.type | Artigo de periódico | pt_BR |
dc.identifier.nrb | 001135974 | pt_BR |
dc.type.origin | Estrangeiro | pt_BR |
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