Lumacaftor-ivacaftor effects on cystic fibrosis-related liver involvement in adolescents with homozygous F508 del-CFTR - Inria - Institut national de recherche en sciences et technologies du numérique Access content directly
Journal Articles Journal of Cystic Fibrosis Year : 2022

Lumacaftor-ivacaftor effects on cystic fibrosis-related liver involvement in adolescents with homozygous F508 del-CFTR

Abstract

Advances in digital medicine now make it possible to use digital twin systems (DTS), which combine (1) extensive patient monitoring through the use of multiple sensors and (2) personalized adaptation of patient care through the use of software. After the artificial pancreas system already operational in children with type 1 diabetes, new DTS could be developed for real-time monitoring and management of children with chronic diseases. Just as providing care for children is a specific discipline—pediatrics—because of their particular characteristics and needs, providing digital care for children also presents particular challenges. This article reviews the technical challenges, mainly related to the problem of data collection in children; the ethical challenges, including the need to preserve the child's place in their care when using DTS; the legal challenges and the dual need to guarantee the safety of DTS for children and to ensure their access to DTS; and the societal challenges, including the needs to maintain human contact and trust between the child and the pediatrician and to limit DTS to specific uses to avoid contributing to a surveillance society and, at another level, to climate change.

Dates and versions

hal-03866719 , version 1 (22-11-2022)

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Cite

David Drummond, Jérémy Dana, Laureline Berteloot, Elena Schneider-Futschik, Frédérique Chedevergne, et al.. Lumacaftor-ivacaftor effects on cystic fibrosis-related liver involvement in adolescents with homozygous F508 del-CFTR. Journal of Cystic Fibrosis, 2022, 21 (2), pp.212-219. ⟨10.1016/j.jcf.2021.07.018⟩. ⟨hal-03866719⟩
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