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Amyotrophic lateral sclerosis care and research in the United States during the COVID-19 pandemic: Challenges and opportunities.
Muscle & Nerve ( IF 2.8 ) Pub Date : 2020-05-23 , DOI: 10.1002/mus.26989
Jinsy A Andrews 1 , James D Berry 2 , Robert H Baloh 3 , Nathan Carberry 1 , Merit E Cudkowicz 2 , Brixhilda Dedi 1 , Jonathan Glass 4 , Nicholas J Maragakis 5 , Timothy M Miller 6 , Sabrina Paganoni 2 , Jeffrey D Rothstein 5 , Jeremy M Shefner 7 , Zachary Simmons 8 , Michael D Weiss 9 , Richard S Bedlack 10
Affiliation  

Coronavirus disease 2019 has created unprecedented challenges for amyotrophic lateral sclerosis (ALS) clinical care and research in the United States. Traditional evaluations for making an ALS diagnosis, measuring progression, and planning interventions rely on in‐person visits that may now be unsafe or impossible. Evidence‐ and experience‐based treatment options, such as multidisciplinary team care, feeding tubes, wheelchairs, home health, and hospice, have become more difficult to obtain and in some places are unavailable. In addition, the pandemic has impacted ALS clinical trials by impairing the ability to obtain measurements for trial eligibility, to monitor safety and efficacy outcomes, and to dispense study drug, as these also often rely on in‐person visits. We review opportunities for overcoming some of these challenges through telemedicine and novel measurements. These can reoptimize ALS care and research in the current setting and during future events that may limit travel and face‐to‐face interactions.

中文翻译:

COVID-19 大流行期间美国的肌萎缩侧索硬化症护理和研究:挑战和机遇。

2019 年冠状病毒病给美国的肌萎缩侧索硬化症 (ALS) 临床护理和研究带来了前所未有的挑战。用于进行 ALS 诊断、测量进展和计划干预的传统评估依赖于现在可能不安全或不可能的亲自访问。基于证据和经验的治疗选择,例如多学科团队护理、饲管、轮椅、家庭保健和临终关怀,变得更加难以获得,并且在某些地方无法获得。此外,大流行已经影响了 ALS 临床试验,因为它们损害了获得试验资格测量、监测安全性和有效性结果以及分配研究药物的能力,因为这些通常也依赖于亲自访问。我们回顾了通过远程医疗和新颖的测量来克服其中一些挑战的机会。这些可以在当前环境和未来可能限制旅行和面对面互动的事件中重新优化 ALS 护理和研究。
更新日期:2020-07-15
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