Challenges in Chronic Genetic Disorders: Lessons From the COVID-19 Pandemic

To examine the impact of the COVID-19 pandemic, we interviewed 26 patients with lysosomal storage disorders receiving enzyme replacement therapy. 20 (77 %) had significant interruption in their treatment, with an average of 8 (range 2–28) missed doses. Alternate methods of delivering uninterrupted c...

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Autores principales: Pal, Swasti, Bhatia, Sameer, Bijarnia-Mahay, Sunita, Verma, Ishwar C, Puri, Ratna Dua
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer India 2021
Materias:
Research Letters
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8079848/
https://www.ncbi.nlm.nih.gov/pubmed/33883315
http://dx.doi.org/10.1007/s13312-021-2202-x
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author Pal, Swasti
Bhatia, Sameer
Bijarnia-Mahay, Sunita
Verma, Ishwar C
Puri, Ratna Dua
author_facet Pal, Swasti
Bhatia, Sameer
Bijarnia-Mahay, Sunita
Verma, Ishwar C
Puri, Ratna Dua
author_sort Pal, Swasti
collection PubMed
description To examine the impact of the COVID-19 pandemic, we interviewed 26 patients with lysosomal storage disorders receiving enzyme replacement therapy. 20 (77 %) had significant interruption in their treatment, with an average of 8 (range 2–28) missed doses. Alternate methods of delivering uninterrupted care including home therapy were used. Vulnerable patients with chronic genetic disorders require organization for their multidisciplinary needs of care.
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spelling pubmed-80798482021-04-28 Challenges in Chronic Genetic Disorders: Lessons From the COVID-19 Pandemic Pal, Swasti Bhatia, Sameer Bijarnia-Mahay, Sunita Verma, Ishwar C Puri, Ratna Dua Indian Pediatr Research Letters To examine the impact of the COVID-19 pandemic, we interviewed 26 patients with lysosomal storage disorders receiving enzyme replacement therapy. 20 (77 %) had significant interruption in their treatment, with an average of 8 (range 2–28) missed doses. Alternate methods of delivering uninterrupted care including home therapy were used. Vulnerable patients with chronic genetic disorders require organization for their multidisciplinary needs of care. Springer India 2021-04-28 2021 /pmc/articles/PMC8079848/ /pubmed/33883315 http://dx.doi.org/10.1007/s13312-021-2202-x Text en © Indian Academy of Pediatrics 2021 This article is made available via the PMC Open Access Subset for unrestricted research re-use and secondary analysis in any form or by any means with acknowledgement of the original source. These permissions are granted for the duration of the World Health Organization (WHO) declaration of COVID-19 as a global pandemic.
spellingShingle Research Letters
Pal, Swasti
Bhatia, Sameer
Bijarnia-Mahay, Sunita
Verma, Ishwar C
Puri, Ratna Dua
Challenges in Chronic Genetic Disorders: Lessons From the COVID-19 Pandemic
title Challenges in Chronic Genetic Disorders: Lessons From the COVID-19 Pandemic
title_full Challenges in Chronic Genetic Disorders: Lessons From the COVID-19 Pandemic
title_fullStr Challenges in Chronic Genetic Disorders: Lessons From the COVID-19 Pandemic
title_full_unstemmed Challenges in Chronic Genetic Disorders: Lessons From the COVID-19 Pandemic
title_short Challenges in Chronic Genetic Disorders: Lessons From the COVID-19 Pandemic
title_sort challenges in chronic genetic disorders: lessons from the covid-19 pandemic
topic Research Letters
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8079848/
https://www.ncbi.nlm.nih.gov/pubmed/33883315
http://dx.doi.org/10.1007/s13312-021-2202-x
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