Accès ouvert
2025
article
OpenAlex
Francesco Gavazzi, Emily Yu, Zarrin Tashnim, Sarah Woidill et autres
Despite their importance, rare diseases' impact on patients and families is understudied. This is particularly true for ultrarare disorders, such as multiple sulfatase deficiency (MSD), a pediatric neurodegenerative disorder. To address this gap, we captured caregiver perspectives on how multiple sulfatase deficiency …
us, de
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Accès ouvert
2024
article
OpenAlex
Maren Doenhardt, Markus Hufnagel, Natalie Diffloth, Johannes Hübner et autres
By means of a nationwide, prospective, multicenter, observational cohort registry collecting data on 7375 patients with laboratory-confirmed SARS-CoV-2 admitted to children's hospitals in Germany, March 2020-November 2022, our study assessed the clinical features of children and adolescents hospitalized due to SARS-CoV-2, evaluated …
de, at
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Accès ouvert
2021
article
OpenAlex
Louisa Ammann-Schnell, Samuel Groeschel, Christiane Kehrer, Saskia Frölich et autres
BACKGROUND: Rare and severe neurological disorders in childhood not only heavily affect the life perspective of the patients, but also their caregivers and families. The aim of this study was to investigate the impact of such diseases on the family, especially on …
de
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