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

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Date
2021
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Type
URI
http://hdl.handle.net/10183/234547
Subject
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.
In
Molecular genetics and metabolism reports. New York. Vol. 28 (2021), 100788, 4 p.
Source
Foreign
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