文摘
摘要目的:描述的影响COVID-19重症肌无力患者(毫克)。
背景:COVID-19大流行的健康和社会影响在毫克的人不完全理解。
设计/方法:MGFA毫克注册表是一个致病,全国注册MG患者至少18岁,住在美国。设计一个自定义的“COVID-19问卷”发出MG注册参与者在2020年6月的半年一次的跟进。收集反应从6月到2020年8月。使用描述性分析方法。
结果:总共456个参与者完成了COVID-19问卷。均值±标准差的年龄为65±13和53%是女性。均值±标准差MG-ADL和MG-QOL15r总得分分别为4.8±3.9,9.6±7.5。参与者普遍报道的大流行,74%的人感到焦虑。为了避免COVID-19感染,参与者报告练习社会距离(95%)、穿防护设备(91%)和避免旅行(87%)。参与者咨询他们MG提供者通过远程医疗视频会议(43%)、普通诊所访问(21%),和电话(20%),16%不可能与他们的供应商联系。毫克药物在大多数参与者(93%)持平。直接接触COVID-19患者被报道在43个(10%)的参与者。在97名参与者(21%)报告有关COVID-19感染症状在过去6个月,9参与者住院,4需要重症监护病房(ICU)承认,和1需要插管。97名参与者中只有33 COVID-19症状(34%)进行了测试。 One participant reported being diagnosed with COVID-19 resulting in ICU admission without intubation. COVID-19 specific treatment was not given.
结论:尽管焦虑水平高,COVID-19感染症状和MG注册参与者是罕见的。大多数病人已经能够保持联系与他们的毫克提供者和继续毫克药物不变。
披露:贝内代蒂博士德莱昂没有披露。制度的Immaculada波斯历八月收到NIH的研究支持。制度的Immaculada波斯历八月已经收到重症肌无力的研究支持美国(MGFA)的基础。制度的Immaculada波斯历八月收到Ra通过MGFA制药的研究支持。Immaculada制度通过MGFA波斯历八月已经收到Alexion研究支持。Immaculada制度通过MGFA波斯历八月已经收到ArgenX研究支持。Immaculada制度通过MGFA波斯历八月已经收到催化剂的研究支持。制度的Immaculada波斯历八月已经收到了来自维罗纳的研究支持。Immaculada波斯历八月已收到个人补偿的范围0 - 499美元作为数据安全监测与NIH NIAMS董事会成员。Immaculada波斯历八月已收到个人补偿的范围0 - 499美元与NIH研究所作为格兰特评论家。 Tarrant McPherson has received research support from Myasthenia Gravis Foundation of America. Dr. Granit has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Immunovant Sciences GMBH. Dr. Granit has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Argenx. Dr. Granit has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Alexion Pharmaceuticals. Dr. Granit has received personal compensation in the range of $500-$4,999 for serving as an Expert Witness for Jackson Kelly PLLC. Dr. Granit has a non-compensated relationship as a collaborator in clinical trial design with Cartesian Therapeutics that is relevant to AAN interests or activities. Dr. Benatar has received personal compensation in the range of $500-$4,999 for serving as a Consultant for UCB Pharma. Dr. Benatar has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Biogen. Dr. Benatar has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Mitsubishi Tanabe America. Dr. Benatar has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for AveXis. Dr. Benatar has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Viela Bio. Dr. Benatar has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Immunovant. Dr. Benatar has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for SwanBio. The institution of Dr. Benatar has received research support from Orphazyme. The institution of Dr. Benatar has received research support from Biogen. Dr. Benatar has received intellectual property interests from a discovery or technology relating to health care. Dr. Benatar has received intellectual property interests from a discovery or technology relating to health care. Dr. Cutter has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Biodelivery Sciences International, Biogen, Click Therapeutics, Genzyme, Genentech, GW Pharmaceuticals, Immunic, Klein-Buendel Incorporated, Medimmune/Viela Bio, Medday, Merck/Serono, Neurogenesis LTD, Novartis, Osmotica Pharmaceuticals, Perception Neurosciences, Recursion/Cerexis Pharmaceuticals, Regeneron, Reckover Pharmaceuticals, Roche, TG Therapeutics.. Dr. Cutter has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Astra-Zeneca, Avexis Pharmaceuticals, Biolinerx, Brainstorm Cell Therapeutics, Bristol Meyers Squibb/Celgene, CSL Behring, Galmed Pharmaceuticals, GreenValley Pharma Ltd, Mapi Pharmaceuticals LTD, Merck, Merck/Pfizer, Opko Biologics, OncoImmune, Neurim, Novartis, Ophazyme, Sanofi-Aventis, Reata Pharmaceuticals, Teva pharmaceuticals, VielaBio Inc, Vivus, NHLBI (Protocol Review Committee), NICHD (OPRU oversight committee).. Dr. Cutter has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for JASN. The institution of Dr. Lee has received research support from Myasthenia Gravis Foundation of America.
