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Elstein, Deborah; Giugliani, Roberto; Muenzer, Joseph; Schenk, Jörn; Schwartz, Ida V.D.; Anagnostopoulou, Christina
Molecular genetics and metabolism reports, 09/2021, Volume: 28Journal Article
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. •The COVID-19 pandemic has changed how physicians and patients interact.•A survey explored the impact of these changes on the care of patients with lysosomal storage diseases.•88% of respondents noted that the pandemic had affected standards of care.•Increased need for personalized care and direct communication was noted.•Increased reliance on telemedicine was also highlighted.
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