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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
source: Molecular Genetics and Metabolism Reports
year: 2021
authors: Elstein D,Giugliani R,Muenzer J,Schenk J,Schwartz IVD,Anagnostopoulou C
summary/abstract:The impact of the COVID-19 pandemic on the standards of care of patients with lysosomal storage diseases and 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 telemedicine, the respondents highlighted the need for a personalized approach to care, direct and frequent communication with patients, and greater involvement of patients and caregivers.
organization: Independent consultant, Jerusalem, Israel.DOI: 10.1016/j.ymgmr.2021.100788
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