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利用数字健康技术对肌萎缩侧索硬化症进行远程监测:是否正在向数字化护理和研究转变?

Remote Monitoring of Amyotrophic Lateral Sclerosis Using Digital Health Technologies: Shifting Toward Digitalized Care and Research?

作者信息

van Unnik Jordi W J, Ing Leslie, Oliveira Santos Miguel, McDermott Christopher J, de Carvalho Mamede, van Eijk Ruben P A

机构信息

Department of Neurology, UMC Utrecht Brain Center, University Medical Center Utrecht, the Netherlands.

Sheffield Institute for Translational Neuroscience, University of Sheffield, United Kingdom.

出版信息

Neurology. 2025 Jul 8;105(1):e213738. doi: 10.1212/WNL.0000000000213738. Epub 2025 Jun 3.

Abstract

Current care and research pathways for amyotrophic lateral sclerosis (ALS) primarily rely on regularly scheduled visits to specialized centers. These visits provide intermittent clinical information to health care professionals and require patients to travel to the clinic. Digital health technologies enable continuous data collection directly from the patient's home, bringing new opportunities for personalized, timely care and a refined assessment of disease severity in clinical trials. In this review, we summarize the state of the art in digital health technologies for remote monitoring of patients with ALS, ranging from televisits through videoconferencing to sensor-based wearable devices. We explore how these technologies can benefit clinical care and advance treatment development. Despite significant progress, real-world adoption of these technologies remains limited. An overview is provided of the key barriers hindering their widespread implementation and the opportunities to advance the field. Significantly, there is an urgent need for harmonization across stakeholders through consensus guidelines and consortia. These efforts are essential to accelerate progress and harness the full potential of digital health technologies to better meet the needs of patients.

摘要

肌萎缩侧索硬化症(ALS)目前的护理和研究途径主要依赖于定期前往专科中心就诊。这些就诊为医疗保健专业人员提供间歇性临床信息,并且要求患者前往诊所。数字健康技术能够直接从患者家中持续收集数据,为个性化、及时的护理以及在临床试验中更精确地评估疾病严重程度带来了新机遇。在本综述中,我们总结了用于远程监测ALS患者的数字健康技术的现状,范围从通过视频会议进行的远程医疗会诊到基于传感器的可穿戴设备。我们探讨了这些技术如何能使临床护理受益并推动治疗研发。尽管取得了重大进展,但这些技术在现实世界中的应用仍然有限。本文概述了阻碍其广泛实施的关键障碍以及推动该领域发展的机遇。重要的是,迫切需要通过共识指南和联盟在各利益相关方之间实现协调统一。这些努力对于加速进展并充分发挥数字健康技术的潜力以更好地满足患者需求至关重要。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/4d51/12187388/6c3b9f1ea360/WNL-2025-200636f1.jpg

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